Last week, I was admitted to the hospital. I stayed for four days.
I was having increased trouble breathing. I was unable to walk. Yes, some of it was increased weakness in my legs, but much of it was that I simply couldn't breathe after taking only one or two laborious steps. My oxygen saturation would drop, and my heart rate would jump sky high, no matter what I did. Even if I never moved out of bed, but just tried to sit up more to reach something, I was winded.
|My son said 'Are you sick Mama?'. I said 'Yes sweetie, I am'. He said 'Oh okay. Here. Hold my hand.' Because that's what I do for him when he is in the hospital (or as he calls it 'Pokes House')|
On the third day, they said they didn't know what was happening, but they also felt there could be a psychological component. I would be leaving. I was devastated and froze. I meekly said 'Okay', and they left the room. I asked just one doctor, instead of a whole team, to come back. I told him I didn't understand, and I was scared to go home. My family was worried I would die if i didn't get better soon. He reiterated their previous conclusions. When asked to expand upon the psychological part, he said that they felt that I was sick for so long that I have just gotten used to it and wasn't trying hard enough. Suddenly and unexpectedly, I began crying. Well, not just crying, loud all out can't-make-intelligible-words sobbing. I said 'I just want to play with my son again. I really feel I am trying hard'. I have always done everything doctors have asked of me, even when it isn't easy. I sobbed loud and hard for over an hour.
I have heard several people, friends and strangers, say they have been told their illness is all in their head. I have never heard this myself. After all, I had diagnoses, many of them. I thought I could expect to hear it at some point though. And having that forethought, I thought I would handle it well. But I didn't. I shut down. I was so depressed that I barely talked for two days. Even to my family. Even when I went home. I just stared blankly ahead. So I left the hospital feeling physically the same, except additionally feeling terrible about myself.
|A silhouette of my son and husband in the window of my hospital room|
My husband tried to tell me that they just didn't know what was wrong, and maybe they felt the need to have some sort of diagnosis. I have left hospitals with the 'I don't know' statement, and although they can be disheartening, they are not damaging and crushing. I don't expect everyone to know what is wrong, doctors are humans too and subject to the same shortcomings as the rest of us. They can't know everything. I am very medically complicated with five autoimmune diseases and have grown accustomed to the 'I don't know' response. But I realized that those 'It's in your head' statements, the same ones others around me have faced, are not helpful and can be very damaging. These statements turn the problem back around on you. They say the problem is not in the mechanics of your body, but in the essence of who you are. That the problem doesn't lie in all of those abnormal tests, it is inherent in who you are.
I understand that is not how they want it to come across, that possibly they really want you to get help, but I don't believe that is the right way to do it. And since I am not one to complain without any ideas of solutions, I will offer this. I would much prefer to be told 'I'd like to start you off with a counselor to speak with, since being ill for so long can be hard and stressful'. This way separates the problem from who you are and focuses the problem back on your body and your situation. I think even problems of depression (and other mental illnesses) by itself should be treated this way. It is never helpful, nor motivating, to hear the problem is you, that you are not trying hard enough.
Honestly, I don't think I could try any harder. I have multiple disabling conditions and a disabled child. I have a lot on my plate. And every day I try my hardest. Some days my hardest is in my wheelchair and some days my hardest includes attempts at walking and doing routine tasks. Just in July, I was walking most of the time with my cane, and every time I land back in my wheelchair full time, I slowly work my way out of it. I agree that I have some anxiety about walking, which I think is valid and legitimate after being stuck in places, like the back of a grocery store, unable to make my leg take another step or the many, many falls I have had, no to mention the intense joint pain. But I always make an effort. And although often recovery is slow, I am always trying. I have always been hard working. When I was younger, I started college at 16 and for the next seven years, I had always had a full time job with full time school until gaining my Masters degree. I worked two jobs while caring for a medically complex infant and being quite ill myself. I may not earn an income now, but I still work hard every day. It just so happens that things like dressing myself, moving between rooms, and taking myself and my son to medical appointments is the hard work that I do.
I cannot fake abnormal blood tests, including all of those that have confirmed my many autoimmune diseases. I cannot fake abnormal imaging. I cannot fake abnormal respiratory tests, especially when those tests come out exactly the same in every triplicate test every four hours. I cannot fake the alarms and worried nurses rushing to my aid when I am simply trying to transfer to the restroom. Just because those don't easily fit together into a textbook diagnosis, doesn't mean they aren't real and that I don't feel the consequences of those. I don't enjoy having to tell my son every day 'Sorry sweetie, Mama can't do that'. I don't enjoy cancelling plans with my friends and family last minute. I don't enjoy being unable to cook or care for my family. I don't enjoy being unable to use the restroom by myself. I certainly don't enjoy being restricted during my hospital visit to using the bedside commode while being helped to transfer and undress by two nurses... and using the commode in front of an audience of two or more people.
The other unfortunate outcome of this is that I have no one to turn to for medical care. I have been turned away from countless doctors being told that I am too complex for them to feel comfortable handling. I appreciate the honesty, I do. But it leaves me with the question, who will? I feel I have exhausted the system. Everyone points me to the University medical system, that they are the only ones able to deal with my level of medical complexity. Yes, they have wonderful facilities and knowledgeable doctors, but they are very, very busy. I am grateful for them, and they have saved my life before and will likely ultimately do so again. When I call to say I am sick, they tell me that I can come in for an appointment in six months. That can help with long term care, but what about now? What about when I am sick and am not functional now? I always make those follow up appointments, but those times in between when I am sick and the people around me are afraid of losing me, I have no one. If I call the University, I almost never get a call back. Local specialists won't see me. My primary care doctor will see me, but is not equipped for these types of complex illnesses. Local hospitals even turn me away, and the larger hospitals are either stumped or angry that I am there if I am not actively dying. So I am left feeling on my own and feeling there is no one there for me and willing to help. I'm sure I'm not the only one in this place, this lonely scary place of serious illness. We are the lost of the medical system, with no one there to fight for us, because the ones who are there for us are holding our hands and just trying to hold our lives together with arms that simply cannot reach the breadth of things that have fallen away from us.
|For my son, who has sensory integration issues and autism, us snuggling is a rare moment that feels so sweet|
|My son loves making funny faces, and laughter is good medicine|