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.

The Fog II

The fog has been particularly thick these past few weeks. Maybe it’s the constant barrage of awful news of our world that is falling apart. Combined with our own personal struggles that seem never ending and yet so small when set inside the world that is crumbling around us. My health has been unpredictable and unexpectedly bad recently.

All these things contribute to the fog that seems to not be fading but just getting thicker with every day. I thought had plans for my summer but I can’t really see even a week ahead of me now. When I’m so fully immersed in the fog, I really struggle to understand what I am meant to do next. People ask you that often, whether it be in the context of your life in general or just what is happening next in the course of your day or maybe your overall goals- where you want to go next. In any context I am unable to answer that question. I have to wait for the fog to clear. At least that’s the excuse I give to myself. I can’t really think of any other way to explain it.

If your world feels foggy too then maybe we can reach out and somehow hold hands in the fog even if we can’t see each other.

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:

  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.