ME is a very unforgiving disease especially to those most afflicted. I myself have been reading this forum for about four years, but I didn't choose to join till recently. I have been waiting for a diagnosis which I hope will come soon and has been a long time coming, over ten years for me.
Your voice is always heard when you post on these forums. Your voice matters to me and to the many PR members. Many of us can relate to your situation because we have been there or were there at some point in our illness.
I was very surprised to learn as a guy, I am in the minority here. I feel I have lost a lot to this disease, but I still fight on in any way I can.
Thank you, that was very kind.
I am still awake (for now!) and was thinking more on this subject - something I've never been able to share with others because I didn't feel they would understand. The hardest part about me being ill is not actually that I am ill. The hardest part by far has been that I am ill while YOUNG. Nearly all of the patients I have ever talked to had a chance to live more of their lives first. They had a chance to advance in their careers. They had a chance to get married. They had children. Most of them are grandparents, so no where near the life experience I have had. They now have families that support them, at least partially, either physically, financially, or emotionally – or in some cases all three. I never got that chance. I never got to do those things, and now I am completely alone. I did get the chance to have a relationship at least, and to get married - but the disease ended that. I never got to really start my career as I was in the middle of a degree when I got sick. I never got to have children. Even if I ever get better, by that time it might be too late.
Because of my illness, I can’t relate to any people in my own generation, and I also can’t relate to people who are older than me either because their experience is so very different from mine. The hardest part about me being ill while young is the knowledge that now, even if I enter remission or miraculously get cured, I will have missed the prime years of my life for building my career, and having a family, and I can never get them back. If I get well, I will be broke, and it will take me years to build up my life financially so that I could even afford to adopt children, assuming I would even qualify by then. I will never get back my youth. I can never be normal again, or relate to people my own age again. I won’t have any of the photos or videos that my peers have of this decade of their lives, between their late 20s and late 30s, where they were fit and healthy and happy and social, and active in their careers and relationships. I might get better, but just in time for wrinkles and graying hair and a loss of my fertility and desirability as a woman. Society is VERY harsh toward women's value with respect to their age and appearance (often it seems all that matters to others). One day I was in my 20s and vibrant and I fell acutely ill - the next day I may wake up and I will be fortunate to be better but I will already be in my 40s or older, with the body of a woman who has been bedridden for many years. My body is suddenly aging kind of rapidly... like I'm in my 60s, rather than in my 30s. I was single most of this time I've been ill, but missed my peek to be able to make the most of it.
I know there are many counterpoints to be made to these statements. Most of the time I am positive about my prospects, because I am glad to be alive and there is still life to be lived, however limited it may be. But inside, it is very hard to talk about to others but this disease stole my future from me. I was just about to have a stellar career, I was almost finished with a degree that made me a bit of a rising star in my field. Then I was too sick to finish and had to withdraw. I can never withstand the type of work that that career would entail again. I have all this debt now, for nothing. The thing I loved most to do, I can no longer do. All my peers passed me and have all these accolades, and it looks like I just wasn't good enough to finish. In a very competitive field, nobody cares that you got sick. They assume you used it as an excuse and pulled out because you really couldn't hack it. I waited to start a family because I had planned to do so with my husband when I had established my career. Now I have neither husband nor children, nor career either, and I've lost near all of my friends because conversation between us has just gotten so awkward. Even if I continue to make the progress I'm making and get better, how can I ever catch up to what I've lost? It just so happened that I got sick at the most critical juncture of my life, during a decade that just happened to be the most critical for all the things I want in the future. Had it been a few years earlier, or a few years later, it would still be bad but I would not feel so lost and without identity. Everything I believed myself to be, I am not anymore. Everything that mattered to me, is not in my life anymore.
It is hard for me to admit it, because I pride myself on being able to do everything against impossible odds, completely on my own. I like to smile and make people feel at ease that I am still ok, I am still a person. But even though I see many good things in my life, and believe I can still do good things for others in my future, I am in the midst of real emotional agony. I am not really a person at all anymore.
This thread just brought all this up for me, because I was surprised how badly I wanted to have a place just to hear other people talk out loud about their struggles. I thought when I first saw this opportunity, "Well, I'm doing better now, do I even need this anymore?" But apparently, I still need the emotional support very badly, even if physically I am in a bit better shape than I used to be. I have a lot of fears about the future. If all of my medical experiments on myself fail, then at least I'm used to that. But how will I get through decades of this? And if they actually succeed, how am I going to deal with the sudden ability to think clearly and see the devastation around me, the wreckage of a life that was totally obliterated? Where do you even start to rebuild your body and the life around you?
People with cancer, and even with AIDS now, get all kinds of support. It's still hard, and terrifying, but at least there are a million places for them to call and get help, find others who know what they're going through - so much so that they can find people in their age group, with their specific medications, and often even in their specific town or region. Usually, they can physically get to support group meetings, or someone will pick them up. They don't get tired after only half an hour of leaving bed so they can't make it there, have the meeting, and come back home. Moreover, people with cancer generally have an end point to their struggle - they are sick for a few months or a few years, and then they either get better, or they pass on. They know what they're fighting for. They don't linger in that state of taking chemo forever, decade after decade vomiting and losing their hair (like I have been losing hair and vomiting, but without the temporary cause), never rejoining the living but never getting the rest that comes with death either. My mother had a very aggressive cancer, so I am speaking of this not to be unkind, but out of a genuine understanding of what that journey is like. Our journey as M.E. patients is much harder in a lot of ways, particularly socially and psychologically. I hover near death for years, but I want to keep living so I keep trying. You have to make a choice, and I'm glad for the choice I made. But even so, apparently, I have a lot of feelings about it that I didn't realize I had.
The point is not to compare. It's not to say "this person has it better and this person has it worse." Everybody in life has struggles, and they are hard no matter who you are. It's just to say, "this is the specific reason why this is so utterly devastating, and why I feel so alone."
Maybe other people will read this and relate to some of it, and feel less alone. I never say it, and maybe that's why I feel so isolated. Maybe nobody else gets it, but at least I tried. At least I found words to articulate part of how I'm feeling.
I don't know if I will remember and be well enough by tonight to be on this call or not. (I already forgot, yet again, that it was happening until I got an email notice that there were replies to this thread - thank god for email notifications!) So if not, at least I said part of what I am feeling.
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Incidentally, frogITF, I'm very sorry you have your own experience of being a minority in this disease. We are all minorities simply for having it at all, so being the minority within the minority within the minority sucks.
I have found in my years being stuck online, that men seem to be far more likely to post to forums and comment sections, whereas females lurk, or perhaps aren't on the computer at all. That's just a general observation across all kinds of internet pages. I assume, based on comments I have seen from other women about why they did or did not post before, that this has partly to do with the sense that many women get that their voice is not important, or that they should not disagree where a man has forcefully expressed an opinion. Having been an educator in my past, I am aware that that happens often in a classroom setting too. Anyway, regardless of the reason, it might be beneficial to you. The statistics I have read in the past say something like 1 in 7 people diagnosed with M.E./CFS is male. But the men who are part of the patient community make up a very vocal minority, and many are quite knowledgeable and have done some great things for patient advocacy. So perhaps that will be helpful to you as you seek out support, that even if you are statistically in the minority, online you're still in good company. In the last phone support group I was part of, out of I think it was a total of 7 people, 2 of them were men - one actually a 20 year old guy who only joined the call once and then dropped out, maybe because he felt he did not relate to the rest.
Anyway, the point of all this rambling is to say I hope you find the support you need. And again, thank you for the kind words. I don't hear them very much. And
I feel very self-conscious about typing online, even when it isn't too physically painful to do, because the part of my brain that can edit things doesn't work anymore, so I end up writing really long stuff that I can't then re-read to cut down and get more to the point. I don't mean to give others with this illness a headache with all the words! I just can't form concise thoughts anymore since I got ill! I can't summarize a main point to save my life now. Sometimes when I venture to write anything online, people are very harsh, because apparently it is very uncool on the internet to speak in terms that are more than 147 characters long.
People seem to read it as me being offensive and arrogant, but it's actually because I have diagnosed severe cognitive dysfunction, likely from severe brain inflammation. Thanks for being nice about it - for sure not everyone is. It's another thing that makes it hard for me to connect with others since getting ill.
