Dear Emergency Room,

Another trip to a hospital. This time the Emergency Room. It’s fair to say that when you are in an ER at 2 am, you are not feeling, looking or acting your best. You might even be terrified out of your mind thinking that this is finally going to be something really really bad.

That was me the other day. I was in so much pain. I was crying and upset and scared and tired. I was in a strange city in a strange hospital, my family thousands of miles away. It took many people, many hours, and a few drugs to calm me down. But even when I could breathe again I was still an anxious mess. I wanted to go home and be in my own bed but I also wanted the pain to go away. That catch-22 you are always in when you find yourself in the hospital.

Many hours into my stay someone knocked on the door. I thought it was the nurse with more medicine but actually it turned out to be even better. It was another member of staff who peeked in and said “I saw you were missing a pillow, I’ll bring you one.” At first I didn’t really care. That’s very nice of him but it’s not exactly pain meds. But that pillow was the beginning of me getting to be calm. The comfort that it gave me in being able to relax my head and feel a little more protected, changed more than I would have ever thought it could. After that I realized that the person who had seen me as a person on a mattress without a pillow and actually bothered to go find one for me was the true hero of the day. They had taken into account the discomfort that arises in those situations outside my immediate medical emergency: the discomfort of the hard bed, being away from home, being cold and feeling exposed. That meant so much.

The technician who came in to take me to my scan a few hours later had the same kindness in his heart. He gave me a warm blanket while I was in the machine which he then covered me with afterwards back in the room. It was your typical scratchy hospital blanket but it was warm and it symbolized so much more. Those people could see I was scared, I was vulnerable and I needed comfort. Many people can see that without acknowledging it and not even get close to trying to solve it because that is a lot to ask, especially in an emergency room setting. They are busy and see hundreds of people like me and in much worse condition every day. But that night, that person gave me that extra bit of comfort and it made more of a difference than I could have thought.

Again, it wasn’t because it was my favorite duvet from home or anything, it was the consideration, the understanding and the kindness that the gesture of these items showed me. It gave me a more human connection to the people treating me and gave me “tools” to be able to be calm because I could rest a little more, feel some comfort and be warm. That night I felt the warmth not only from my pillow and blanket but from the people who brought them to me. Thank you.

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:

  1. Not being able to go to protests
  2. Not being able to go and help people out for fear that I would get in the way
  3. 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
  4. 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
  5. 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.

Climbing Mountains

I did that climb once. The stairway 665 meters up a mountain in Northern Ireland. That was one of the last hikes I ever did. It was tiring, but I made it up and down again with my group. I was really proud. Almost exactly three years later, the change in my abilities and my health is stark. I struggle with pain and exhaustion from a simple walk around the block. That is a physical challenge for me today.

It’s difficult to accept that change. Because I don’t know what is causing it, I can’t say whether one day I will be able to get back to where I was. At the same time I can’t say that I won’t continue to get worse and eventually not even be able to make it around the block at all. I wanted to get into hiking. I moved to Scotland with the picture of breathtaking mountain climbs and hikes through the rugged landscapes in mind. Those never happened.

I try to accept that people change and that not being able to hike a mountain doesn’t make me bad or lazy or anything really. It just makes me what I am. I have tried to push myself physically with stubbornness and determination and that did not end well. It wasn’t worth the way it hurt my body. Walking around the block and doing a little yoga is much better than nothing at all. And I’m grateful every day that I am able to move my body even a little bit because now I know how quickly things can change.

I wanted to climb mountains. Maybe I will one day. Or maybe my mountains just look a little different.

Dear December,

Christmas is almost here. But this year it’s impossible not to be touched by the suffering the world has gone through and our own individual pain. I think it’s fair to say every human being is struggling with something this year. Accumulated grief from (more than) 12 months of unfortunate events seems to want to spill out all over the pretty decorations and fairy lights. Yet, for the most part we keep it in. We don’t want to ruin all those sparkly decorations or admit that we don’t actually have the appetite for a traditional Christmas dinner. It’s in a strange way both sickening and comforting to watch the Christmas advertisements playing as they always have, and shops still reminding us to buy gifts and indulgent foods, when these are the last things on our mind. These holiday traditions act as a kind of barrier for a couple of weeks as we use them to shield ourselves from all the hurt.

It’s not really the best way to end the year. Instead of letting all our pain out, we are forced to keep it in, even more so than during the rest of the year. What I want to do is sob loudly and bang my fists on the floor like a toddler, but instead I sit quietly and smile and bake cookies and listen to Christmas songs. As if everything is as it should be. Sometimes I’m grateful for the distraction of the busyness of the season, where some days those tasks take up so much time that the sadness recedes a little. But most of the time I find it tedious. I want to acknowledge all we have been through this year, instead of burying it all under a pile of tinsel. If we’re ever going to get the Christmas spirit out from under the grief, that grief has to be exposed and picked through in order to move it and make room for all that the season demands.

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.  

Dear Doctor,

Dismissing my Pain Won’t Make it Go Away.

As an otherwise young and “healthy” person, nobody wants to admit that something could go wrong. This includes the various healthcare professionals that I have seen as mysterious symptoms began disrupting my life three years ago. These unpleasant and often hostile meetings with the healthcare system left me with deep distrust and instinct to avoid them at all costs.

However, when I was struck by the most intense pain I have ever experienced, my fear of what the pain might mean sent me to the place I had come to avoid. There comes a point where you are hurting so much that you know you can’t actually solve the problem on your own. By my slightly messed up standards that point is quite extreme pain. This sudden attack of pain was the kind that makes you scream out loud and writhe on the floor. It was the kind where you instinctively make a fist and curl your toes inwards. I was unable to move or speak and I could feel tears covering my whole face although I couldn’t remember when I began to cry. After half an hour I blacked out, whether from the pain alone or something else, I don’t know. It was bad enough to scare the people around me, and they were the ones who made the decision that someone had to intervene.

The intervention did not go to plan. The doctor wasn’t able to see me for another few hours. By that time, I still couldn’t walk or stand unaided but the scream-inducing sharpest parts of the pain had subsided with help from an unhealthy amount of painkillers. I described the incident to her and she simply looked at me and said “when is your period due?” I chuckled a little and tried to explain that this was not a cramp. This was the most intense pain I had ever felt. But I answered honestly and said it could come within the next few days. Wrong answer.

The scariest experience of my life was now downgraded to me overreacting to period cramps. The conclusion being that I needed to toughen up a little. The way I was treated that day only served to confirm all my previous experiences. Treated like a hysterical young woman being overdramatic about something as normal and simple as period pains. Treated in a manner that told me I was wasting the doctor’s time and I should feel guilty about that. Sent away feeling humiliated and beginning to doubt myself- wondering if I really was just being silly. I wasn’t offered any kind of exam, follow-up or other kind of consultation that may lead to my pain being reduced.

Since then I have had three more of these attacks. Nothing that am able to do at home can make the pain subside, I just have to wait it out. But a medical authority figure has told me that I am being dumb, and it’s nothing. Just because she said it was nothing, didn’t make it go away. It just lessened what tiny bit of faith I had left in the system that is meant to help me, and discouraged me from seeking help another time. In fact, that visit made my life in the long-term worse rather than better.

Being dismissed when you are at your most vulnerable, and being treated as someone who is looking for attention, being overdramatic or wasting the system’s time, hurts. Perhaps the answer to my problems is very simple and a pill could change my life for the better. But without someone who listens and cares and believes me, I might never know.