Chronic Illness and Disability – Letters From the Fog

Dear Healthcare,

My body already doesn’t feel like it belongs to me at the best of times. Whether it be emotional or physical changes due to medications or simply due to a physical condition, I almost never feel in control. This is never more true than during medical appointments. I have encountered just one doctor throughout my life who asked for permission before each and every single thing she did. Even the small things: touching my shirt, touching my arm, taking a blood pressure. That made me feel like I was a human being who had autonomy over my body and all its parts. It made me feel like I had a part to play in my health rather than being someone’s science experiment. Those are the little things, which most people just take for granted at a typical appointment. Of course the nurse can take my blood pressure, otherwise why am I here? That’s not the point. The point is she is taking MY blood pressure. MINE. Therefore, I should be the person who decides when this happens.

During some appointments I don’t even feel human anymore. I am being moved around, poked and squeezed without ever having really understood why, let alone given my permission.

I believe this should be the standard throughout medicine even for young children. A lot of my medical trauma originates from being held down at doctor’s appointments as a child, not given a choice in what was happening to me at all, and not understanding why it was happening. Of course children cannot give their own full consent for major surgery or treatments because they are unable to understand the full consequences or their situation like the adults and medical professionals around them can. However, within these things there is still room for discussion and asking permission. Furthermore, in non-life threatening instances and/or casual check-ups there is definitely flexibility to have those conversations with parent, child and doctor/nurse.

Especially when there is anything that involves touching a child (or anyone’s) body it is crucial that they understand at their level 1. Why this is happening 2. What is going to happen exactly 3. That they say yes this can happen now. If they say no this cannot happen and are in a calm frame of mind, maybe it doesn’t need to happen right then. Maybe it can happen in a few minutes after a deep breath or a little further conversation.

It often surprises me that in 2022 healthcare professionals still don’t see the need to ask. They say to me (as an adult) “this is what we’re doing” “lie down” “put your arm here” etc. The other day, my arm was grabbed and forced over my head without even asking me to move it first or asking my permission to do so. This upset me greatly. If I had been calmly asked to move my arm I would have moved it, of course. If they had asked permission to position it for me, I would have let them. The way they chose to do it has a bad outcome for me mentally (and physically because it’s uncomfortable).

Consent, permission, discussion, patient inclusion, all these things and everything associated with them are crucial for a kind and compassionate healthcare experience. It can make it not only smoother for the patient but also for the provider as well. Fewer screaming children or tearful adults, such as myself, and better outcomes in the long run. The doctor’s office does not need to be a place children, teens and adults alike fear because they are going to get restrained and hurt by scary people with scary devices. There is another way. Adults don’t have to feel that fear either, whether it be with them from childhood or newly-acquired from a recent procedure. This way, people are more likely to attend their cancer screenings and other vital appointments and to engage positively with the healthcare field throughout their life.

So, if you are going to touch someone else’s body or do anything else to it and that person is conscious, ask them for permission. Explain what is happening and why and allow them to have the control of saying yes or no.

Dear Breast Cancer Awareness Month,

Bringing awareness to different diseases seems to be a big part of the “community spirit” within the chronic illness and Disability communities. My social media is filled with awareness posts all the time as I follow people with all kinds of different illnesses, all of which have their own special months. September is Childhood Cancer Awareness month and October is Breast Cancer Awareness Month. Both of these are difficult for me, but October is hardest because breast cancer has been such a big part of my life lately.

Bringing awareness is crucial. For funding and general decreasing of stigma and inclusivity etc. However, for someone who is already more than aware of the existence of these things, their awareness months are months full of triggers. I have a sibling who is a pediatric cancer survivor. They are many years out, and so September is pretty much the only month I start to think about that time in the past or possibility of recurrence or anything like that because it is all around me. My mother was diagnosed with breast cancer in 2020. That changed our lives forever and still impacts us today. That time period during her active treatment was highly traumatic for both of us, especially being in the middle of the pandemic.

Since then, I have myself been diagnosed with dense breast tissue and have “extremely high risk” of developing breast cancer. The benign lump sitting on my chest needs checking often and it is a constant reminder of what might be to come. In my nightmares I think about the day I will be brave enough to explore the preventative mastectomy. Therefore, it is only natural that whenever I see the pink ribbon I feel sick to my stomach. Whenever my Instagram shows me an awareness post of a young woman demonstrating how to check for lumps it makes me cry. Because of my life with illness, I do use social media to connect with people in similar situations and to be inspired, in a way. When I am in a stable place, I am able to read people’s inspiring posts and be happy for the people running a marathon after chemo or having children or ringing the bell or whatever they post about. But when I am in a fragile place, or my lump is hurting, or my mom is sick or I’ve just had an appointment or even with no clear reason, one post with the ribbon can send me into a full-blown panic attack.

Breast cancer is horrifyingly common. That is a fact. Checking for lumps can save your life. That is also a fact. Especially for young women who are not offered mammograms. We must be our own advocates. I am well aware of all that. The awareness campaigns are important and great. Rational Me knows that. Emotional Me is terrified of them. They make me think of my friends or family being in that statistic that is blared at us all month long. It makes me worry 100 times more about my own future and how I handle my cancer risk.

Sometimes these months also angers me because people see those short awareness videos and think they know what breast cancer is. I know I can’t claim to know either because it was my mother’s experience, not mine, but from the sidelines I can say it is so much more than finding the lump and saving your life. It is something that scars you in so many ways, scars your family and friends and changes your life no matter how hard you try to stop it from doing that. It completely transformed my mother and transformed me as her daughter as well. People’s view of it as “the easy” or “good” cancer is difficult to swallow. If only they could see us.

Lastly, during October the vast majority of the awareness is put on the “young person finding a little lump and having it all sorted out” storyline. There is almost nothing around about metastatic or stage 4 breast cancer even though that is what kills women every day. That is the stuff that even awareness campaigns are wary of touching because it is real and terrifying and much harder to stomach than the happy ending they try to portray. There are very effective drugs out there to treat Stage 1 breast cancer, this is true. Finding it at that stage is also a very important step, that is true too. But some people never find a lump. Everyone’s story is different. Metastatic breast cancer has much much fewer treatment options and yet it is often hidden away from the pink ribbon story during October.

These months are important. I am grateful to those people who are in a place to be able to share their stories and raise awareness and talk about breasts and lumps and everything else. I am personally not there. October is really hard for me and my family and I spend a lot of it hiding away and this is why.

But finally, check your breasts. Ask your doctor questions. Be a self-advocate always.

Dear University,

I was supposed to start my last year of college this month. Instead, I left university. What lead me to this decision was fighting the administration of my school for more than two years about preserving accommodations set in place during the pandemic for students such as myself who were directly or indirectly impacted by COVID-19 in way that prevented them from returning to traditional college life. I realized in that time that the pandemic gave institutions, including my school, a chance to pretend that they cared about vulnerable members of their community and then quickly forget about them. At the beginning of the pandemic, it seemed that maybe this crisis might change how people viewed Disability and chronic illness and we could come out the other side with more empathy and more accessibility. Instead, it seems that return to normal means return to ableism.

Students of all ages were affected by COVID. For students who already had stressors in their lives such as being at high-risk for severe illness, being a caregiver, losing family members to Covid, or struggling financially the effect was more dramatic. This stress is clear in numbers of students who left college early on in the pandemic. In fall 2019 2.6 million students started college in the US. 26.1% of them did not return in fall 2020.[1]

When my university transitioned to remote learning in 2020, I thought it was going to save me. My mother had been diagnosed with cancer, and I had my own health issues to deal with. With access to distance learning I could deal with all that and get a degree. The school was telling students that it had invested a lot of money in technology for remote learning and to accommodate students’ needs. I believed them, but soon found out that all the promises were short-lived.

After one semester of online learning, the university was ready to go back to “normal.” I learned from speaking with other students with chronic illnesses and other needs that the decision to abandon remote learning so suddenly made them feel forgotten. Even though we had been promised accessible learning through the crisis, the end of the crisis was decided by someone’s opinion; someone who failed to consider the people whose crisis was nowhere near over.

Like many students who were hesitant or physically unable to come back to campus, I felt pressured by the administration. One of the ways they did this was to inform me that I could not receive support from the school remotely. If I needed any kind of support with my studies or otherwise I could only get this when I returned to campus. This was impossible for me at the time- being in another country with a sick parent to care for during a global pandemic. Throughout the last two years in school, I was not included in class discussions, and there was more than one day when I sat at a blank screen when the professor forgot about me or did not bother turning on the computer that day.

My school was aware of my personal circumstances. In response to my many emails over the years I received the same automated email saying I should really “try harder” to get back to in-person learning. With all the tragedy that came with covid, we also had an opportunity to change for the better when it comes to access to school and work. This was also illustrated by the “mass-disabling” event Covid is. It is estimated that Long Covid is keeping up to 4 million Americans out of work.[3]

It is sad that despite all the promises early on in the pandemic, the return to normal somehow justifies the return to ableist attitudes. The idea behind accessibility is that all people can be included. In terms of remote working and learning, those who are not interested in that option are not forced to use it while people who depend on that option can use it with great benefit for everyone involved. Allowing me to continue to use remote learning could have saved my degree, but my university’s response to the “end of the pandemic” took that away. We should have seen that we were doing something good in paying more attention to accessibility and inclusion but instead it seems that the people in charge were never sincere about changing things. They were just happy when they could go back to the way things were without considering those of us who will never be able to do that.

[1] https://hechingerreport.org/more-students-are-dropping-out-of-college-during-covid-and-it-could-get-worse/

[3] https://www.forbes.com/sites/williamhaseltine/2022/09/02/long-covid-is-keeping-millions-of-people-out-of-work/?sh=4939f2d952cc

Dear Fellow Patients,

I don’t know if I’m the only one, but I think A LOT about the last two years. The pandemic and everything that came with it changed my life forever. For many reasons.

Many nights I lie in bed and flash through defining moments of the pandemic. I think about my responses and my feelings at the time. I doubt myself; wonder if I was thinking the right things. I always come back to one specific moment. It is one of the biggest regrets I have.

I was sitting in the lobby of the oncology ward at the hospital. It was the height of pandemic panic and the chairs were strictly distanced and parted by red tape and angry red stickers on the floor. A young woman came and sat at the other end of the room. She got out her phone and called someone. And then she started crying and said “it’s cancer mom, it’s cancer.” Then her crying got my intense. I could hear her sobs and her words but she was many red stickers and tape away from me. I was locked in my seat, but I was feeling all her emotion. (I wasn’t just sitting on the oncology ward for no reason after all). I could feel my own eyes well up with tears as I was witness to this incredibly traumatic moment in this woman’s life.

Once she had hung up, she sat numbly for a little while, tears still coming down her face. Then she put her phone away, put on her backpack and walked away. After she was gone I went to the restroom and cried my eyes out. For her. And also for another reason. I was so incredibly angry at myself. That whole time I had sat frozen and terrified of the meaning behind those red stickers. Had it not been pandemic times, I want to tell myself I wouldn’t have hesitated to run over and give her a hug and ask her if she needed anything at all. I would have told her it was going to be okay even if it didn’t feel like it in that moment. But I didn’t do that. The rules were so strict at this point. We were all so scared of catching COVID. Especially on an oncology ward. I was afraid that I would then make her sick or her me. That maybe me violating social distancing would make her even more upset.

But two years later I still regret everything about that moment. I should’ve gone for it. I should have let her see I was crying with her. That she was not alone. Because in that moment she must have felt so so alone. I should’ve stepped over that tape and on all those stickers and moved the chair and been with her. Human to human. Allow her to cry on my shoulder instead of into nothing. Reassure her. Hold her and her terrible news to make it a little less heavy. But at that time, I didn’t. One might say that the fog of the pandemic was hanging over me so intensely that it actually prevented me from seeing what the right thing to do was. I regretted it immediately as she walked away and I still do.

I know how I would do it now, COVID or not. I vow to remember that young woman so that I can do the right thing next time. Isolation in times of crisis is one of the most painful things that someone can experience. Be with each other. Hold each other. Love each other. Family, friends, strangers. Everyone.

Disability Pride Series: Conclusion?

July is coming to an end. Just because Disability Pride Month will be over, doesn’t mean that people with disabilities should stop talking, advocating and educating. On the contrary.

This July was my first pride month, acknowledging my disabilities, writing about them and engaging with the disability community online. I was inspired by what I saw and read. I hope that one person might have read my posts and felt something similar.

During this month I have also engaged with stories and experiences of the negative sides. The reasons why people are unable to be proud of who they are with their disability. Stories of abuse and ignorance and experiences that highlight how inaccessible the rest of the world can really be. It is precisely because of this that we have to keep our voices loud. Every month of the year.

I don’t feel pride in myself every day. In fact, there are still more days a week where I feel like a burden and a sense of shame about my differences than there are days where I feel confident to live without trying to hide. But being able to see the way other people embrace every part of themselves makes me feel less alone.

Disability rights and accessibility has a LONG way to go. It is difficult to feel proud when every day you are put down in one way or another, whether it be the simple inability to get somewhere or participate in something due to inaccessibility or actual bullying or ignorant comments from another person. It can feel like the whole world is against you. And that makes it so hard to claim your place in it and claim it with pride. And yet so many people have done so and keep on trying to do so every single day despite all the challenges. Those are the people I look up to and hope to be one day.

July is over but my journey of self acceptance is only just beginning. Good luck on yours.

Disability Pride Series: Pity

When I am with my family and we pass someone using a wheelchair the overall reaction is pity. I can tell. They make that “tutting” sound or say something like “aren’t we lucky to be able to walk to the restaurant!” or “I should never complain again, some people have it so hard!” You know, the usual.

I used to feel pity too. Then I realized that that pity is unnecessary. And condescending. And shows a lack of understanding of how people can live in diverse ways. Actually it was videos from Shane Burcaw (https://www.youtube.com/c/SquirmyandGrubs) many years ago that first made me think. He explained it so well. And from his videos I could see that he was living a fulfilling and happy and not miserable life.

As I became familiar with the disability community online and on social media they were able to educate me about how mobility aids aren’t something to be sad about, for example. That people who can use wheelchairs use them to get around and do the things they want to do. In fact they are a way to be free. The same applies for so many other devices that many people in society associate with having a “sad” life or being deprived of “fun” things.

Now that my own mobility is more limited, I try to remind myself of these things. Because even when it is about yourself (maybe especially when it is) you can easily absorb that pity from others and start to feel self-pity. Self-pity is almost an antagonist to Pride, and since July is Disability Pride Month, I am trying to be free of my self-pitying thoughts as much as possible. It can be difficult when people around you very clearly feel sorry for you, or express that they do straight to you. My parents don’t hide the fact that they think if I were to get a mobility aid at my age, this would be extremely sad. My father has even cried about this very fact. Of course, they are allowed to grieve for their non-marathon running, non-athlete-of-any-kind- daughter, but only to an extent. After that, I want to show them that I am happy to be able to have something that allows me to travel more independently and that I am not sad about it at all. That it is helpful and why should that be a bad thing?

I can also sense when my peers are pitying me. In fact, this often comes out in quite nasty ways. Like not inviting me places, or not including me in things, or not discussing things with me. I know that to a large extent they do these things because they are frightened of me with a disability. They are scared of taking me somewhere where something might happen, they feel sorry for me if I have to say no because it’s not accessible to me, or they are so scared to upset or “burden” me with “silly” things. I just want to be treated with normal respect and consideration. The kind that I give everyone else regardless of ability. I want to be able to decline something and give an honest reason and then not to be upset and not to upset the host either. To not be seen as too fragile physically or mentally but to be respected when I choose to step back because of it. That might seem a lot to ask, but in reality non-disabled people actually live their life like this every day. Because their being is not something to be pitied and fretted over at every turn.

Treat every individual the way they want to be. Don’t make assumptions about people’s lives based on things you can see on the outside.

Disability Pride Series: For the Future Me’s

I wish that I hadn’t grown up with “disability” being a word attached to so much fear. For a long time I thought it referred to people unfortunate enough to have been born unable to do things I did like run or go to school. I now see that everything I thought disability was was wrong. I now know that it is a broad spectrum encompassing so many beautiful and diverse people with so many different abilities and ways of life.

We need to shout about disabled pride for the future. For the children who might learn about disability and differences in a positive way rather than a negative and frightening one. For the people who will develop disability as young adults or teenagers and not feel ashamed or out of place. So that those children don’t need to fear ignorance and bullying and isolation from others and from themselves. My life would have played out differently if someone had educated my family and friends. If they weren’t still scared to death of the phrase “disability,” I wouldn’t have to keep pretending things were okay when they weren’t. I wouldn’t have to push myself to unbearable physical and mental pain to be what they believed I should be. I could just be me.

I hope that in the future, there will be an even greater openness around help. Medical devices, mobility aids, stim toys, you name it. All the things so many people rely on just to live their lives. Today many people, including myself, feel a sense of shame around these things. I keep them a secret as much as possible. I feel that they are wrong. That I am wrong when I use them. And it shouldn’t be that way. We should celebrate all the different innovations that have made life possible for so many different people and all that they are now able to bring to the world.

Disability Pride Month is important to me for the future me’s. For those girls who might not have to hide their pains and can ask for assistance without shame and without backlash. Young people who are believed by everyone around them and embraced in any alternative ways they have to get by in their world. Whether that be with medicines, wheelchairs, caretakers or anything else. I hope that when those future young people are here, their families are no longer scared of the word “disabled” and accept an open and accessible world for all. I wish for there not to be more me’s soon enough. That they can instead feel loved and in turn love themselves. Proudly.

Disability Pride Series: How can I feel proud when feel like a burden?

The idea that I am a burden because of my illness takes up a lot of space for me. I feel it all the time. Every day. When I genuinely need assistance with something I don’t dare ask because I am desperately trying to calculate who I haven’t “used up” all my calls for help with.

In general people expect illness or pain to “go away” after a certain period of time. Depending on the level of patience of the person, that time probably varies from just a couple of days to maximum a couple of weeks. But what if you are sick and in pain every single day? And you need the kind of help that people offer in “special circumstances” every day? That is difficult for outsiders to understand and it fills the sufferer with an immense guilt.

When someone breaks their arm or leg and rely more heavily on friends and family for a period of time, they often express that they start to feel like a burden. For people who are sick or need assistance for months or years a time, that feeling can begin to chip away at their sense of self, their confidence, their worth and overall wellbeing. This is heavily influenced by the people around them, of course. If those people aren’t accepting or understanding of the situation, that makes the situations even more difficult. If the people around you are supportive, understanding, reassuring and honest about their role in your life, that will make it easier to an extent.

I don’t have a good answer to embracing your disability and ridding yourself of the burden complex. It can be overwhelmingly difficult and for some impossible. The main thing to remember is that having the help you need to get through each day or each task is not something to be ashamed of. And if anyone you are asking for that help makes you feel that it’s shameful then they should not be in your life. People who are unable to understand the way you need or want to live, have a problem, not you.

Honesty is also very important. The people around you are allowed to be honest about how they feel as much as you are. They should be able to say “I’m tired today” or “I’m having a bad day and I’m going to ask someone to help me help you, if you don’t mind.” If there is a healthy dialogue of that kind then you know that you are not being a burden but everyone involved can express themselves and their human emotions honestly so that no one has to try to assume that the other is thinking of them in a certain way. All this is easier said than done because I know many people rely on a small handful of people willing to help and support them. If you don’t have an army of people to choose from, of course relations can get a little tense at times. Those tense moments are part of life, whether it be between friends or family or carers and patients. No one can be an angel at all times and that’s okay too. Just because there is a moment of annoyance doesn’t mean that the love isn’t still there or that anyone is thinking of you being a burden. Our minds just tend to go to the most extreme scenario, when in fact someone might just be annoyed about something unrelated.

For me, Disability Pride Month is about trying to get rid of this feeling of being a burden as much as I can. And replace it with pride about my accomplishments and all my good traits. Even if feeling burdensome always lurks in the background, it would be something just to put it there- in the background, and bring the positive things to the foreground so that they take up the most space in my mind and can possibly overpower the negative feelings at times. There is not a perfect answer, at least I haven’t found it yet. I haven’t gotten all the way there. But this month is a start to pushing that away, embracing everything amazing about me and my disabled body and acknowledging everything that I can do despite my challenges.

Disability Pride Series: Invisible Disability

Apart from a slightly “funny” walk and very occasional flapping hand movements, all the parts of me that are disabled are invisible. They are concentrated on the inside of my body and if I’m out and about (wearing clothes as you usually do) no one would label me as having a disability. There are many many people like me. Millions. Although this is slowly changing, the universal sign for disability/accessibility is the classic stick figure in a wheelchair.

People who have never spent time with members of the chronic illness community associate the word with people missing limbs or with visible conditions that have been “recognized” (and judged) for many years. I thought the same until I educated myself on invisible illness.

It first came to me when my mother was diagnosed with cancer. To the outside world who hadn’t seen her change in physical appearance the way I had, she looked fine, especially with a hat or wig on. However, I realized that she had become disabled. That she needed that seat on the bus because she could not physically stand, despite having two legs. That she needed assistance in settings like grocery stores and moved slower than other people, even if it was “just” from exhaustion. But nobody knew it. Nobody could see it. People thought we were being “those people” who sit in the disabled seats because they don’t feel like walking through the bus.

Then I realized that that was me. That my conditions combined made me want and need assistance in certain places which I couldn’t get. As I simultaneously got sicker and began understanding myself better it became more difficult to push through situations such as airports which were simply too much for me. But because I looked fine, I felt and absorbed the mean looks or the judgement coming from others. Even those coming from my own family.

In the last four years I have learned of the disabling quality of pain. Unless you are physically writhing around or screaming, pain is invisible to those around you. People with chronic pain bear it every single day with minimal help and understanding from society. It goes without saying that mental illness goes under invisible disability as well. Those around you can’t see your brain, can’t hear what it is telling you and won’t know the internal distress you are feeling at any given moment.

For disability pride month it is so important to embrace people with invisible disabilities too. We already feel a lot of doubt, maybe guilt for asking for help when we get answered with judgment. It is also a daily struggle and can be humiliating to have to give detailed explanations of our conditions in public situations as a way to “justify” our needs.

The “sunflower lanyard program” is aiming to help. Many places in Europe have rolled out the lanyard which people can wear as a discreet sign that they have a condition. On some airport websites, it states that staff will be ready to assist when they see the sunflower symbol and it specifies that they will not ask questions. Although it is slow to get integrated many places, the goal is for people who want to, to wear them wherever they want to to avoid the awkwardness that often comes with invisible suffering.

https://hiddendisabilitiesstore.com/

Your disability is valid no matter what it looks like or doesn’t look like!

Disability Pride

July is Disability Pride Month!

I have to be completely honest, before I became part of the disability community I did think of disability as something sad. I didn’t know anyone disabled (I probably did but was unaware) and the way it had been talked about around me was as something tragic.

I was also in deep denial about being disabled. My illnesses were never acknowledged by my family, and still they will run from the term “disability.” Sometimes I struggle to understand their fear of it. It goes far beyond my lack of understanding of disability in my childhood. This is the first year I acknowledge my disabled pride, and yet I still do it almost anonymously because I am still surrounded by toxic attitudes (baby steps).

To be proud and disabled to me is about accepting, loving and empowering the parts of me that are different to the majority of others. It should be about sharing all of myself without trying to hide the “sick” bits. For my autistic side, it means I should be proud enough of myself to unmask. On top of that it means the ability to celebrate things that were once shunned in our society and educate others so that we get further and further from old and destructive mindsets. It means so many things. I endeavor to try to share more about this topic throughout the month here, for whoever wishes to listen!

Despite all there is to be proud of, I still feel the element of sadness. To me, it has to do with the grieving process of leaving behind what I thought my life would be before I understood that I was different to the pictures I had in my mind. It is seeing the sadness on loved ones’ faces when they seem disappointed in my abilities or lack thereof. Disability Pride Month should be about coming to understand the sadness and being proud that it is part of my disabled experience. To understand that it is by no means only sadness– it coexists with a strong, fulfilling, fun and happy life as well.

Stay tuned for more disability pride in July!