I am not saying that chronic illness - ALL kinds of chronic illness - isn't hard to bear and isolating in any case. Very few people want to deal with someone else's pain and discomfort, and for some "friends" canceling one meeting at the last minute, or mentioning in passing that one is not 100%, is already enough of a dealbreaker.
Thing is, once in a blue moon you can find someone who is open to deal with a friend with an imperfect health. Maybe growing up they had a parent or relative with some kind of health issue, or they experienced difficulties in that department themselves, or they are doted with unusual compassion and open-mindedness.
These friends will be willing to educate themselves on your condition, read articles, overcome the societal prejudice towards not perfectly able people and even invisible illnesses, and they will invite you in their lives.
When I "just" had IBS, or gastric issues, or anxiety or even fibromyalgia and ME (which both used to be undoubtedly weird, even if now are getting normalised a bit) I was lucky enough to meet a couple of these "normo-abled" friends, who understood (sort of) my limitations and accommodated some of them.
I was careful to keep them out of the darkest moments in my life, as it would have been an unnecessary grief to them and they wouldn't have understood anyway, and our relationship was with 3/4th of myself, there was always this dark corner that would never come to light.
No need to mention that I rarely felt "heard" or "understood", but for me it was enough to feel accepted and still somehow play an active part in their life.
All this changed abruptly after I met with mold. As I mentioned in other posts, after miraculously (a miracle prepared by years of hard work) recovering from ME and fibromyalgia (or rather than recovering, giving them their true name and treating them, name which in my case was Lyme and reactivated Epstein Barr), I enjoyed a few years of decent health before my body was wrecked havoc once again by a casual parasite and a close encounter with some mold species living in my house.
The symptoms were even more violent and horrifying than ME, and remember that with ME for the most part of three years years I had to rest all day to be able to wash my hair, and couldn't walk more than some hundred yards without collapsing, so it wasn't exactly a cakewalk. Just like during the first year of ME, I had a hard time explaining to anyone what was happening because I didn't know it myself.
Then, when the truth started unfolding, it turned out it's not so easy to tell people that you are basically dying because of a tapeworm plus assorted parasites, and mold growing inside of your bowels.
First of all there is the "yuck" factor (make it capital letters). I don't know about you, but personally I didn't feel like telling a lot of people that I was basically a walking parasite depository, and I did kind of worry how that would project on my social image (the reaction of a couple of "friends" confirmed that I was correct in worrying). In a way it was more difficult to explain than back when I couldn't walk or move because of a mysterious retrovirus that no one could see (ME).
Also, me being contagious wasn't completely out of the question, so they were right in feeling "yuck" towards me.
For this reason during that period I mainly kept it to myself, never shared bottles or food with anyone, I accepted that I wasn't going to get any compassion for such a foul disease (two of them nonetheless, and concentrated on treating it.
The coming of CIRS (the insane reactivity to many species of mold) and Multiple Chemical Sensitivity brought up a new set of problems. The people I knew who were ready to accommodate some of my needs did not understand why I had this new set of issues, couldn't stay inside a building, had to leave if someone with a very strong perfume entered the room, that was WEIRD. Too much weird. And remember that ME and fibro were already quite weird. Other "friends"left.
In fact, if I had just kept being ill and courageously accepting my challenges, I might have met with the sympathy of some other compassionate people sympathetic to those who suffer. The problem is, the way I went about trying to save my life was also too much weird too handle for most people.
If you ever have been told by conventional medicine that there is nothing to do and you need to live in unbearable conditions, you may also know that before giving up and accepting your fate it's better to try everything else that is possible, or even impossible.
Although many complementary and holistic ways of treatment are completely sensible and have long lasting traditions and proof of use, for a lot of people anything that is not mentioned in the Mayo clinic website is too "woo-woo" to exist. In recent times sadly several complementary treatments have attracted the attention of various misleading media sources (you know which ones I am talking about, the ones with the crazy conspiracy theories) and this phenomenon doesn't help the treatment's reputation.
Anyway, to get myself out of trouble I had to delve deep into the foreign territories of herbalism, orthomolecular medicine, osteopathy, energy healing, just to mention a few, and the couple of (holistic) doctors I found who helped me and saved my life were pretty much despised by the system.
I always liked to be friends with reasonable people of culture devoid of particularly extreme views, but I discovered that most of those people held an irrationally violent prejudice against integrative or functional medicine. And a good portion of people with chronic illness (I painfully discovered that in my ME days) also shared that prejudice and despise and will not stand by me during my adventures in healing.
So, while in the beginning being ill was 1/4th of my life that I couldn't share with anyone, then later my treatments were another 1/4th.
That s where it gets even weirder. Since I have CIRS I get violent reactions to prolonged exposure to various types of mold, which is basically omnipresent in buildings, and because of that I can only live in hotels (W E I R D), while waiting to have the money and strength to go live in a van (these days more fashionable, but still weird). My lifestyle is so crazy that I don't have the heart to mention it to the few normal people I meet in my sporadic "normal life" situations, like classes or workshops or meetups. Needless to say that relationships with those people never get very far.
It makes me sad that I literally never met anyone with my issues in real life, and I don't know how to deal with all this giant iceberg of weirdness that I carry around in the tangible daily life, feeling like a penguin at a wedding party.
If by grace of a Higher Power I will get better (the parasites wars have been won, one mold colonisation has been defeated, the other mold is on its way out) I don't know how I can ever share my life with anyone. Should I just not mention any of the Hell I went through, and do like Holocaust survivors did, enjoy their new lease of life and go on, trying to forget?
But once one's health has been ruined, there will always be some other issue, sooner or later, so I shouldn't forget, I can't forget. Also, I'd like to honour these years of hard work and ingenuity and fighting teeth and nails.
Do I have to resign myself to never be seen and understood? Hide my past and my present, and basically lie most of the time? ("oh I forgot an engagement I have to leave, no, it's not because there is mold in this cafe, also because if I say it you won't believe me") Or do I accept that I will always be rejected because all this weirdness is just too much for anyone to bear?
You will understand me now when I say that occasionally I miss the days when I "just" had a serious chronic illness.
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