judgement – Letters From the Fog

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!

Dear Doctor, Please Don’t Assume I Have Time.

The other day I was at an appointment, and when we were trying to find a day after my bloodwork to go over the results, the doctor said, “You don’t have a job, do you?” I am a full-time student so I said no, not at the moment. Apparently, she didn’t catch the full-time student part, and then said, “Right, then you can come in this day at this time, no problem.” She had made the appointment before I had a chance to respond.

This might sound silly, but this exchange played on my mind for a long time afterward. Just because I am not employed right now does not mean I am not busy. Just because I do not have a 9-5 job does not mean that I should not be asked about what time might suit me best. Perhaps I was taking my sick mother to her appointment that day or visiting a friend or attending a lecture or having a different appointment. The list goes on.

There are a lot of reasons why this disturbed me. First of all, being chronically ill can most definitely count as a full-time job, in my opinion. I have many different doctors and appointments and it’s a struggle to make it all fit, especially when they all have this similar attitude when scheduling. Secondly, in that type of rushed and dismissive interaction, the doctor demonstrates to me that they do not see my time as valuable. They don’t ask whether I have the time or whether I am able to come at that time. In fact, it might be just as well because with the pressure on the system, it might be the only appointment available for a long time.

This brings me to my third point: that we as patients are treated in a way that forces us to be uber grateful for any appointment we are lucky enough to get. There have been other times like this one where I have said I really cannot make that time, and they kind of shrug and say, “Well then you’re going to suffer more because the next available time is three weeks off. You really should take what I’m offering.” This then leads me to panic. Should I take the appointment that I really can’t go to and thank the doctor profusely because I don’t have to wait in agony for three weeks? Then I will proceed to attempt to cancel whatever plans I had for the time of the coveted appointment. If I’m being very harsh, the doctor should actually be thanking me for my flexibility and/or even apologizing for the backup at the practice rather than making me feel guilty for taking up another slot in their schedule.

I have seen a lot of doctors and they have made a lot of wrong assumptions about me. Some are dangerous to my health, but some, like this one, are just insensitive and make me feel like I’m not valued as a person or a patient. Assuming they can see what my life looks like based on the fact that I do not or cannot work and thus assuming that I have nothing more in my life than following the schedule of appointments that suits them best makes me feel like they are not hearing me or understanding me.

I understand that healthcare systems everywhere are under extreme pressure at the moment. I know that appointment scheduling is really an art. But I would still very much appreciate the extra 30 seconds to confirm with me that I really can make that appointment, or even to ask what my daily life looks like, rather than make assumptions about it and in the process insult me by implying that I have an empty life.

Dear Useless Blob, here we are again.

As the world unravels around us and the need to be kind and helpful increases every day, the feeling you get of being a chronically ill, useless blob increases with it.

Some of the top things that upset me and make me feel most useless:

Not being able to go to protests
Not being able to go and help people out for fear that I would get in the way
Not being able to go help out because my body has no stamina and fainting after standing for 10 minutes in front of lots of people who have plenty to deal with already would probably not be very helpful to anyone
Not being able to invite people to stay with me when they need a place because staying in my home would make them feel in some way like they need to assume a caregiving role
The feeling that haunts you forever that you can not adequately take care of others because you are not able to take care of yourself

Maybe all these things are in my head, but aspects of all of them are definitely real. They may also seem like they’re coming from a selfish place or from a land of excuses because I am scared of getting out there or simply lazy. Lots of people may think that. And if you think that then so be it. All I can say is that neither of those is true. In fact, these things keep me awake at night. I try to brainstorm other ways in which I can be of help to all the people in our world who need it so badly. Of course there are ways. Via the wonderful internet and virtual fundraisers etc. And although these tools can be powerful in their own right, they never seem adequate enough when I’m judging myself.

I don’t have a solution to the Useless Blob problem yet. I have previously found out that denying that there is anything wrong with me in order to go out and push myself to do something useful always backfires and ends up in an either dangerous or embarrassing (or both) situation. The logical conclusion is then that I am being more helpful by hiding away and not getting in anyone’s way. This is also leads to intense internalised ableism…

Where is the balance? I don’t know. Am I thinking of people who suffer every day and night and try to figure out ways that my weak and useless body can help them? Yes. Everyone can do something, and I do what I can with what I’ve got. Even if what I’ve got is the body of a Useless Blob.

Dear Useless Blob,

One of the hardest things about feeling ill all the time is that I often feel useless. Useless is not a nice word, but there isn’t really another way to say it. I feel guilty for “sitting around” and being in a position that from the outside looks like I’m choosing to not get on with things. By “things” I mean basically anything from helping out around the house to doing my college work or getting a job. All the things that a lot of people my age are doing without problems. I can even understand why someone may look at me and think I’m lazy. I understand how it looks. However, I’m not sitting on the couch or lying in bed all day for the fun of it. In fact, there is really no fun part to it whatsoever. I’m sitting there because I’m unable to get up.

I already feel a lot of guilt about my inability to do lots of things every day. Guilt that I say no to a lot of things because I just can’t. But all this gets worse when other people point it out.

“You have two functioning legs, so of course you can get up!” or

“Have you been sitting there all day??” or

“What have you contributed to this??” or

“I think you’ve rested enough now!”

Those are the kind of comments that hurt the most. Trying to respond and explain to the other person what you’re feeling is almost always impossible. They don’t understand that yes, you can still be in pain after a week of “resting.” That yes, you have a headache “again.”

I find this to be a type of compassion fatigue. For people with long-lasting or chronic illnesses, the compassion from the outside world, including those closest to them, often wanes after a certain period of time. When you’ve reached your limit of being sick; when they feel like they’ve given enough. That’s difficult. Not so much because they stop understanding but because you know that you can’t get up just because they stop understanding. That no matter how much they urge you to get over it after so long, it’s not actually possible. So you will end up disappointing them. Feeling still more useless.

I want to go out and work. I want to not be exhausted or in pain. Nothing would bring me more joy than being independent and not relying on others. I don’t want to put extra work on anybody, I hate feeling like a burden. But that’s the reality some days. I wish people on the outside could understand this, not just for me but for everyone out there trying so hard to get up.