Guest blogger: “It is healthy to talk about what you are going through.”

I’m here to make another installment to my Life Lessons section, but this time, with the words of a very special guest blogger. And I don’t say very special because they are well-known, famous, or something like that. But they are, in my opinion, one of the most amazing people to exist. My dear friend–who has a birthday today, no less!–who has impacted my life in more ways than I could count, wrote this several days ago, and I thought it was way too important not to share (especially since they agreed to write something for you all sometime this year!).

I’m really tired of “not talking about your illness” equaling “being a stronger person.”  No.  It is healthy to talk about what you are going through. 

Illness is not something to be shoved away and ignored like it is dirty and shameful.  No.  Illness, disability, old age, and dying are a part of life.  It is natural.  It has been with us forever. 

Every single human being that has ever lived has dealt with it in some fashion.  Every single human being has died, or will die.  If they live long enough, those still among us will will watch a loved one die.  They will get older.  They will encounter disability in themselves or others.  They or somebody they love will get sick. 

For me, it would be unhealthy not to talk about something so inevitable and universal. 

I talk about my illness.  I am sure it makes some people uncomfortable and has driven some people away.  But it affects nearly all of my life right now, and I see no reason to pretend like it does not.

– the author of Black Cat Saturdays

 

No one should be made to feel like they have to deny a part of themselves or a crucial part of their life in order to win the affection and/or acceptance of another. As with anything in life, it’s all about balance. We have to find a middle ground between talking about what we are going through, honestly, and yet not being consumed by it. I know people on both extremes–those who never talk about it, and those who talk about absolutely nothing else. It is detrimental either way. The person who never talks about it–perhaps to keep people around, not make others uncomfortable, or stay in denial about their own circumstances–ends up feeling cheated, abandoned, and can lose self-respect. The person who talks about nothing else, forgets who they are entirely, and sees themselves only as “the person with such-and-such disease.”

But we are more than sick, or disabled, or terminally ill. We still exist, and we still have purpose and love to share. But in order to get to that place, we have to realize–and hopefully be accompanied by people who realize this, too–that we are also people who have to grieve in a healthy manner, who have to express ourselves as we go through this part of life, and it’s not our job to make sure everyone else stays comfortable while we do it.

As written above, we will all go through these things at some point. It’s just that we, who are already going through it, simply don’t have the time or extra energy to spend worrying about someone else’s opinion of how much we’re “allowed” to share before they feel inconvenienced…

a rainbow at night & black cat saturdays

I feel the need to share again: “The Silence of the Dying,” by the Sara Douglas.

Thoughts on Emily Collingridge, and being judged for our disabilities.

These two topics complement each other in an unexpected way.

First, the recent death of fellow M.E. sufferer Emily Collingridge has shaken me. And I’m ready to be honest about why. Usually I would skip this part and post the conclusion of my thoughts, but it’d probably be therapeutic for myself and for those reading (whoever you are) to read a different part of the process.

There are many friends I have with M.E. (or, what is supposedly M.E.) that have never known the level of sick that even I have, much less something like what Emily endured in her final years. And that’s good, really! But it’s scary to think that this could be me, because of my susceptibility to this level of sickness. (And goodness knows not anytime soon, because she had the illness twenty-four years and I’m just at ten, but…) It’s not even the death itself, but the way it happens.

Most illnesses so severe will take you out quicker than this. There aren’t many that drag on and on in such a way… In 1995, as Professor Mark Loveless served as Medical Director of HIV/AIDS Programs at Oregon Health Sciences University, he said in his Congressional Briefing that someone with M.E. “feels effectively the same every day as an AIDS patient feels two weeks before death; the only difference is that the symptoms can go on for never-ending decades.” It broke my heart to hear of her suffering so much, for so long, and, just like Sophia, knowing that if she got hospitalized it’d be the worst thing to happen… Then sure enough…

I don’t want that. I want to be home, wherever that might be by the time I’m at that stage in my life. Who knows, maybe they’ll have hospice options for people like us in the future?

My friends say that even when they were at their absolute sickest with Lyme, they could still listen to music softly or watch television with sunglasses on, and they can’t imagine being that ill and suffering that much, not being able to do anything whatsoever. I can’t imagine it, either. I was only like that for a short amount of time, my symptoms being exacerbated by the trauma of those additional infections, and it just sucks all the happiness out of you (being unable to listen to music, in my case, was particularly difficult). It’s so hard to hear of someone enduring that for so long, to be on morphine from so much pain, and to not make it through… Had she not the illness for twenty-four years, she likely would have been able to bounce back to a less-afflicted state of sickness as she previously had, as many do, going in and out of the severity levels. Yes, she was young, but it is still a quarter-century’s worth of disease affecting her body even as it was still forming.

When you get it young, like Emily did, like I did (though certainly not as young as six years old), you usually do experience a remission (most, at around four years after the onset) and a lot of people stabilize after that. Most stabilize after that, actually, into a moderate or mild affliction. It’s just this 30% that get it really, really bad, and it continues to progress over time; almost all the deaths occur from this group. Some never remit, but for the others, something usually triggers it again after the remission or semi-remission, but that could be anything from a year later to a decade later (like a cancer might stay gone for long lengths of time, or come back within months).

I started this blog with severe M.E., my condition having been worsened by secondary infections, and I was very privileged a couple of months ago to remove the “severe” classification from my blog description, “Chronicling a very special way of life, that of someone living with M.E.,” instead of “severe M.E.” Even when I look outside, I can’t help but be reminded of the people who can’t… I remember a year ago, just wanting to be able to brush my teeth whilst standing up. And I have a chance to get better, still. I’ll be in the moderate group, if I can beat the Lyme disease into submission, and that would be good. (Well, not good, but, given my options…)

I never knew Emily personally, though I was a big fan of her her book for sufferers of severe myalgic encephalomyelitis, and linked to it here several times. It is an indispensable aid to those forced to navigate these unstable waters, one that could have only come from someone who knew its unpredictability and cruelty first hand.

It’s really not often I have to think of the M.E. anymore, because the things I do to keep it in check are just.. routine, after all this time. Really, fighting the Lyme disease is my focus and takes up most of my energy. I suppose that’s why being brought back to the reality that even once I get the Lyme subdued, that I’ll still have this terrible disease, has startled me so.

My niece, who I live with, has been sick with a viral-induced cough, and I’ve been thinking, at least it’s not like the flu (which would hospitalize me) so it wouldn’t be that serious if I did accidentally catch it… But then I remembered that it was a viral ear infection that ultimately made my M.E. relapse five years ago. And again, Sophia Mirza, too, was striken into irreversible relapse by an ear infection. So there really is no such thing as a “better” virus when you have ME. Just the thought that if I were to catch something so miniscule…

It was a lot of triggers at once.

 

And it came at a particularly awkward time, after reading an article about a woman with muscular dystrophy who paints:

“With her condition, most people would just be vegetating, watching TV, enjoying checks from the state. But she does a lot of work. She stays strong.”

I was furious at this.

It’s just more proof that you’re only allowed to be disabled and worth something at the same time, if you still do things. If you can’t, if you’re really, really sick, then you’re just “vegetating and watching tv and enjoy checks from the state.” Nevermind that we need those “checks from the state” to survive, or that watching tv might be the only relief we have from the every day, nonstop suffering…

People don’t want to hear of the severely disabled. They only want to hear of people who are disabled and yet still do things. They don’t want to hear of people who are bedbound to the point of being unable to do anything at all but exist, like so many people I know, and the person I have been (and will be again, one day). People like Emily, when she became too ill to even eat on her own.

Finding that article all started because I was wondering if there was any way I could still do art with the M.E. besides just taking a very long time to complete things. So I googled muscular dystrophy, which, with its similar progressive muscle weakness, was the closest thing I could think of to M.E. that might have more information out there about how to manage it while being an artist.

Then I find an article whose interviewer says that if I can’t do it, I’m just lazy and not strong enough in character!

It was infuriating, and the reason I wrote my “Media and Resilience” rant a long time ago. I really don’t take it as a compliment anymore when people say I’m “so strong” because I’m still doing something

Because what, when my M.E. gets to the point that I can only lie there and breathe, then I don’t matter anymore?

It’s just horrible being reminded that there are people out there who would look at you and think you, as a disabled human being, are inferior, weak, and lazy, for the sole reason of you existing without also inspiring them.

As fellow blogger and severe M.E. sufferer Laurel stated, Emily embodied “strength, spirit and determination — all of which she continued to demonstrate to the very end,” and which was not determined by how much she did.

She did do a lot when she was physically able, even though it took so much out of her. She thought her causes important enough to spend her very valuable resources on them, but when she became unable to continuing doing in her last years, that did not, and does not, make her any less strong or determined.

Lastly, I would ask you to take the time to read Emily’s Appeal, which she wrote over the course of several weeks while she was still able. Additionally, Emily’s story, from her own words, can be found here.

I’ve no idea what kind of conclusion statement would be appropriate for such an entry… Most of this post is a combination of things I’ve written in other places over the past week, that I edited to make into a blog post. So that so much needless sickness no longer occur, I hope that things change for us in the near future.

Somehow.

a rainbow at night

How I Forgave the Doctors That Called Me Crazy

Now, I’m not about to type some grand, philosophical debate about the necessity of forgiveness that will go over everyone’s head… Or at least, I hope it won’t turn into that.

This year I feel I’ve really evolved as a human being. A lot of my focus has been to get rid of the anger I’ve felt… Another major thing I finally let go this year, actually, was the resentment aimed at those who got to enjoy things I may never get to do. Ever. Sure, I couldn’t be angry at friends or family, that was easy enough, but put me in the room with a stranger who’s telling me about how they’re going to a party that night with all their friends, and… You get the idea.

I owe that in huge part to reading Toni Bernhard’s How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers, for actually giving me the tools to know how to do that–how to acknowledge those emotions without feeling I was a bad person for even having them, and focus on how much more wonderful it was that they did get to do those things, than it was that I could not. But I honestly don’t have any explanation for how I came upon the realization I’m about to share in this post, besides that my brain has apparently developed some kinder, more mature, more well-rounded ways of viewing things I’ve thought a thousand times before.

Probably close to 95-99% of people who have either Late Stage Lyme Disease or Myalgic Encephalomyelitis–or, if you’re like me, both–didn’t arrive at that diagnosis very easily. (As those are the main two diseases I have, they’re my focus, but feel free to apply this to whatever similar invisible illness with which you’re dealing/you’ve dealt.) No, it probably went something more like:

  1. Go to the doctor expecting a quick fix for unusually-persistent symptoms
  2. End up getting sent to every specialist known to medicine because primary physician has no idea what’s wrong with you
  3. Get called crazy by every single one of them when the tests either come back negative or don’t show anything significant enough to explain why you feel like you’re dying
  4. Possibly get prescribed the most strongly contraindicated “treatment” for your disease because no one knows what you really have, yet, which makes you immeasurably worse
  5. Get called crazy a few more times, and thus
  6. End up being evaluated by five psychiatrists who don’t find anything wrong with your mental state, or blame everything on a mental disorder that doesn’t actually cause anything you’re experiencing
  7. Finally get the correct diagnosis years later, through what seems like the most random series of events that ever played out in your life

Am I right?

All in all, the stage of acceptance known as “Anger” doesn’t really go away like some of the others. The resentment and anger at all the doctors who could have helped you sooner had any one of them just not been so determined to say it was “all in your head”; the anger at those who called you crazy and said there was nothing wrong with you when you actually had a progressive disease; the resentment at those who thought you were faking just because the tests were negative; the anger you experience all over again at remembering any and all of the horrible doctor visits where you were pleading for them to do something, anything, only to be told you just needed to get out more, and probably see a psychiatrist.

Trust me, I’ve been there. So when this sort-of-epiphany hit me, it was like a ten-year burden had been lifted off of me:

Did I truly, honestly think, that any one of those doctors who called me crazy, had any idea that I was actually suffering from a progressive neurological disease? Did I really believe that those people, those fellow human beings, somewhere inside knew that I was dying, and just decided to recommend exercise and antidepressants for the sheer fun of it?

If they had known that what a terrible disease the original version of “CFS” was–that it was myalgic encephalomyelitis, that it was made worse by exercise, that it was progressive in 25% of cases and fatal in roughly 1 of 20–would they have just told me to “get out more,” or “exercise more,” or “get back to work, you’ll be fine”?

If they had known that Lyme disease or Bartonella exists in the south–that it would lead to multiple sclerosis, that the tests are often negative even if you do have it, that I still needed long-term antibiotics based strictly on the clinical presentation–would they have told me there was no way I could have it, that it was harmless even if I did have it, or that it was “only fatal in people with AIDS” and that there was “no reason to treat”?

Absolutely not.

What kind of monsters did I think these people were? No one in their right mind, especially a doctor who has sworn to Do No Harm, would know the truth of a disease so destructive and still call their patient crazy. If someone was suspected of having MS, or HIV, or cancer, or a neurodegenerative disease, these physicians would have done everything they could to identify and fix the problem. If they had known what I was up against and what the right approach to treatment was, they would have done it.

But they didn’t know. And that wasn’t entirely their fault.

Sure, there are always some doctors who go in it for the money and don’t care that much one way or the other, but they are few and far between. And sure, a doctor who keeps up to date on the latest research and alternative therapies is going to be more open-minded when it comes to a rare case–such as my own doctor, who is actually using me to teach her interns. And we can’t forget that it’s not 100% the doctor’s responsibility to figure out what’s wrong with us based on absolutely nothing: We also have to be honest and not afraid to be our own advocates.

My LLMD says, The passive patient never gets better. (And that pretty much applies to anything in life: If you only sit and wait for life to bring you what you want, and take no initiative to help make that happen, you won’t get anything.) But when it comes down to it, there is a whole cluster of reasons to why most of the specialists we saw were completely incapable of giving us an accurate diagnosis, the biggest of which is lack of information. The reason we patients advocate so much is because in our hearts, we know that if someone else has the information we didn’t, they hopefully won’t have to wait so long to get accurately diagnosed and treated.

Now, there are some exceptions. There are doctors who know the facts and, because of legal reasons and public position, choose to turn and look away whenever one of “us” come their way. But that is also very, very rare. Most all of the dozens upon dozens of specialists had no idea what was wrong with me, what was wrong with you, and could only give us the best advice they knew, based upon what they thought was happening. In hindsight I really do understand how someone could think I needed psychological intervention, if they had no clue that my disease really did do all the things I was reporting.

You don’t throw a paralyzed child into a swimming pool (as happened to one internationally-recognized M.E. patient) to try to “snap them out of faking ill,” if you honestly believe they are sick–you do it if you honestly believe they are making it all up, because you have no knowledge of what M.E. actually does. If there is anyone to be upset with, it’s those in charge of spreading real facts about these crippling diseases, and who don’t do it; not the doctors who have been armed with information they believe to be true, who just so happen to be completely misinformed about what we have.

So I finally just stopped being angry at them for not doing what they weren’t even capable in the first place.

You may have heard before that, Forgiveness is letting go of the hope that the past could have been any different (a quote popularized by Oprah though she’s not who originally spoke it). And in my realization, I also let go of the thoughts that any of the doctors who had mistreated me out of their ignorance, could have ever treated me any differently based upon what they knew. If they knew better, they would have done better. I am now going to instead focus on how blessed I am to finally have my diagnoses, and be glad that I am one of the lucky ones who still had time left to begin treatment. I hope this can help some of my readers move past their anger, also, perhaps just a little more quickly than they would have, otherwise.

Be blessed in the New Year, and always!

a rainbow at night