My partner has been sick. My kind of sick, unfortunately. The kind that has ups and downs, but that doesn’t really get “better”. The kind that is probably “managed”, but not cured. I say probably in that last sentence because he does not have a definitive diagnosis yet. He has some diagnoses — but not one that explains everything. I have been watching him slowly fall apart for at least a couple of years now, and I am worried and scared. But I am also angry because it is taking so long for him to get a diagnosis, because people aren’t taking him seriously, because I’m watching him go through what I and so many others have gone through ( and am still going through now in some ways), and because most people don’t seem to care — and even when they do, it still takes forever.
Part of why I am so scared is having experienced a ton of problems, indifference, and discrimination at the hands of the medical industry. But part is because he has so many of the symptoms I had when I got sick. I have several chronic illnesses, but one of them is extremely rare. The odds are astronomically against both him and I having it. However, I have a theory that it is an illness often caused by (or sparked off by) stress and/or overexertion. I am not any form of medical professional nor a scientist, and I have no proof — it’s just a theory. But if my theory is correct, it makes a lot more sense why we would both have it, despite the odds against it.
He may not have the same illness that I do. But he has so many of the same symptoms. Unfortunately, the symptoms are nonspecific (as they are with many illnesses). While it’s possible that he may have something else (and part of me hopes he does — but part off me doesn’t because I’m afraid it might be something even worse), I am exceedingly frustrated that doctors are dragging their feet over doing the definitive test for it.
He went to a specialist the other day. For the purposes of this blog post, this doctor will be “specialist 2”, even though he has seen other specialists. He was referred to specialist 2 by another specialist, one who is treating a primary chronic illness of his. For this post, they will be “specialist 1”. Let me back up here and mention that he and I have several of the same doctors due mostly to having similar but different government insurance, the difficulty of getting to many doctors for us, living in the same area, having the same primary care doctor, and sometimes recommending doctors to each other or warning each other away from other doctors.
My first doctor who filled the role of “specialist 1” was terrible. I went to see my second specialist of the same type who was very good, as these types of specialists go. That was five years ago now, maybe more. They are far away and difficult to get to. About a year or two ago, he went to see his own specialist of that type. They were better than my first, but nowhere near as good as my second. I tried to get him to go see mine, but he didn’t want to because of the difficulty and expense of traveling there. Finally he gave it after getting only partial beneficial results from his specialist. But by this time, my good specialist had retired and been replaced by another who was still better than his or my first specialist, but not as good as my second. We both have diagnosed illnesses that require seeing a specialist of that type, and so we both see this same doctor — specialist 1.
But she does not believe that he has the same illness I have, in addition to his other illness. It’s possible he doesn’t, but if he doesn’t he has something that presents very, very similarly. So she sent him to see specialist 2, who will also become my specialist 2, because she does not believe the medications I take are having the effect on me that I believe they are.
I went back with him when he went to see specialist 2 to provide moral support and to help advocate for him. Specialist 2 wants him to see another specialist, and also a psychiatrist. They wanted him to see a psychiatrist because they asked if he had any depression or anxiety, and he said yes. He said yes because he forgot how badly it goes when you disclose any mental illness — or even history of it to doctors. He forgot because he is so sick and his memory is affected that badly. Now, I am not saying that people shouldn’t disclose to their doctors, and sometimes it is necessary. I have heard and observed the phenomena of doctors not taking people seriously when they disclose mental illness, but I am not speaking for the experience of everyone. I am only speaking for myself, and also in this instance, broadly for my partner, with his explicit consent.
It has been my experience — and his — that once a mental illness or history of it is disclosed, medical professionals stop taking any other illnesses seriously. This happens sometimes even without disclosure of mental illness — as when our primary care doctor suggested that I might have depression when my symptoms were mystifying everyone, or when my previous (bad) specialist suggested that I have might have a particular mental illness when I was describing symptoms to him — it turned out that I was on extremely insufficient doses of medicine under his care. But it is especially a prevalent occurrence when mental illness or a history of it is disclosed.
Suddenly every illness, every symptom is a symptom of a mental illness. And I don’t dispute that mental illnesses — including some of those that my partner and I have — can cause some of the symptoms of our other illnesses. But they do not cause all of them. And, as I mentioned, since the symptoms of many of our illnesses are nonspecific — many other illnesses than mental illnesses can cause those symptoms, too. Even more importantly, having had mental illnesses for all of our lives, we are familiar intimately with how they present in us. Furthermore, those presentations are not likely to change without a reason.
Regardless, depression and anxiety are not causing him to lose weight, be dizzy, frequently nearly fall down, have extreme fatigue coupled with even more extreme memory problems and trouble concentrating. They are not making him nauseous, not making him vomit or have diarrhea, they do not give him daily headaches and make him feel as though he’s been punched in the eye. They are not taking away his appetite and his libido. They are not causing him to not only lose interest in his hobbies and the things that are most important to him, but sapping every ounce of energy that he has to do those things. They have not turned a previously light sleeper into someone who has to be called and often shaken for five to ten minutes to wake up, or someone who used to wake up and be groggy for an hour or two into someone who has to try for an hour or five to wake up and then is groggy all but the last four-to-six hours of the day. As I mentioned earlier, I don’t dispute that many mental illnesses can cause a lot of these symptoms, but as I also stated, they either were not prone to causing them in him at all, or they presented very differently when they did — and that is a crucial distinction to make. When I pointed out that it was not depression or anxiety causing the issues, but something else, the doctor said, “well, sometimes it can be both, you know?”
If my partner chooses not to see a psychiatrist, he will probably be labeled non-compliant and blamed for any medical issues he has because doctors believe it could be due to mental illness, which he does not want treatment for because he has historically been better able to handle is mental illnesses on his own (which in no way implies that is the best method for everyone) and because he knows it is not due to mental illness. I am afraid — I fear legitimately — that his doctors will not investigate other alternatives, or only investigate them halfheartedly.
So, yeah, I am worried, scared, and angry. Actually, I am enraged. I feel helpless. And for the sake of my partner, for my own sake, for the sake of everyone who has a mental illness and other illnesses or disabilities, I am terrified.