Fellow PMR/GCA Sufferers: Please, Let’s Not Do This

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I recently joined a few PMR/GCA Facebook Groups.

Yeah, I know…  I’m not exactly thrilled with Mr Zuckerberg or his “Facebookgate” buddies either, but I’m still semi-addicted to that social media platform, as a way to keep in touch with friends and family; and it’s not like I get my news there!!!!!

I still throughly enjoy and I am 100% indebted to the Healthunlocked social health network!  For the past 5 months, the amazing HealthUnlocked PMR/GCA community (which has a membership totalling 6,473!) have provided me with support, empathy, understanding and sound, practical advice regarding my PMR/GCA diagnoses and everything that encompasses.  It’s my first stop each day, after I prepare my yogurt and count out my Prednisolone tablets!

However, joining the Facebook Groups, has given me access to a whole new group of people (in my same situation), but who communicate on a seemingly different level and in a more laid back, informal, and “social,” (versus informative/educational) manner.

Not better or worse, just different.

People on Facebook seem to speak more openly and freely;  it’s like they’re having a private conversation, with a friend, over coffee.  They share more about themselves; their family and their friends.  They will quite openly tell you if they’re suffering with hemorrhoids, or state, quite emphatically that “Beet Juice” has been “scientifically” proven to be a cure for PMR and GCA!

And that’s okay.  I feel strongly that it’s my responsibility to “fact check,” everything I read, when it comes to these two autoimmune diseases and I should be held accountable for what I choose to believe.  If I’m gullible enough to believe everything I read, without verification, well shame on me!  I deserve to be sold that big, ol, greasy, green bottle of “Snake Oil!” 

Anyway, I digress…  what I have noticed on the PMR/GCA Facebook group discussions,  that I have not observed on the HealthUnlocked site, is the slightest, on-going, undercurrent, of what I can only describe as a subtle, snideness. 

It is subtle, as I said, but like “pornography,” you may not be able to describe it persuasively, but you know it when you see it.  At least you know what it is to YOU!  After all, one man’s pornography, is anther man’s…  “Oh, never mind…”  I’m not going there!

What you should know, before I get into this rant…  is that, (according to numerous statistical websites, that I shall not reference, because they’re freakin boring!) is that women, are 2 to 3 times more likely to have PMR and/or GCA than men!

So, it stands to reason, that the majority of us on Facebook, HealthUnlocked, or any other  PMR/GCA dedicated site, are women.  

So… what I’ve noticed (and I am treading ever so lightly, as I absolutely do not want to piss anyone off!) is that some people, who are on perhaps a less challenging PMR/GCA journey, occasionally (and I’m sure quite unknowingly) make comments, that could potentially  make others (who are experiencing perhaps a more challenging PMR/GCA journeys) feel somewhat diminished…

Okay, this is bullshit, I’m just going to say it!  After all, this is my fucking rant and this needs to be said… 

Some people say a lot of shit on-line, that makes ME (and maybe some other people too!) feel guilty, embarrassed and in many ways inferior.

There, I’ve said it

Yeah, yeah, I know I have issues…  Yup, I’m damaged goods emotionally, but YOU have to accept that YOU need to take some accountability for YOUR words!

I mean isn’t that what basic empathy, in the context of a conversation, is?

When you say things like, “…pain is not an option for me,”  I immediately ask myself, why I’m apparently  such a big baby?  Why do I allow pain to be an option for me?

When you gloat, (and I mean gloat, not just casually mention!) that you “beat PMR” without ever taking steroids; it makes me wonder what the hell is wrong with me?

When I see someone write, “I just refuse to give into to it,”  I feel bad and ashamed, because I refuse to give into too, but “it” (like the hideous monster it is) turns around, punches me in the gut, and tells me to shut the fuck up and keep walking!

Good on you… no seriously, good on you!!!!

If you’re managing your illness without steroids, BRAVO! 

If you can control your pain with over the counter pain killers, well done!!!

If you can get through, more days than not, without having to take a “nap,” than by all means thank your lucky stars above, because many of us cannot.

If you have continued to work, manage a family, have a social life, or go to school, after your PMR and/or GCA diagnoses, than thank God, Mother Nature, and the Universe, because YOU are one of the lucky ones!

I agree 100% that steroid treatment is the WORST!  It totally sucks, but for those who suffer the devastating, debilitating and very “extreme,” symptoms of the PMR disease… they have no choice!  There are no options for them.  Steroids are the only thing that will reduce the inflammation and until they do that, they are fated to the experiencing the catastrophic symptoms of the disease.  {Note: Those impacted by GCA MUST take steroids or risk going blind, they have NO CHOICE!} 

The answer is simple… we need to acknowledge and accept that the disease(s) impacts everyone differently.  No two cases are alike. Nobody feels the same, exact symptoms as you do.  Nobody’s experience is the same as YOURS!  Your pain level is not the same as my pain level.  Your inability to move is different from my inability to move. Neither disease is “one size fit’s all.”

It saddens me when I read comments like the ones above…  It makes it sound like the rest of us aren’t trying hard enough.  Or maybe we’re weaker than you somehow, or that we’re just failures.

We are all in the same battle… and the majority of us are women.  Can’t we just accept that some of us are being attacked more vehemently, by these diseases, than others?  Can we recognise that not all PMR/GCA struggles are created equal?  Let’s not knowingly or unknowingly make our “sisters” (or our brothers for that matter!) feel bad, or feel “less than,” because they’re not managing or coping with their disease(s) as well as you are.

I’m ecstatic for those of you who continue to “have a life,” after PMR/GCA!  Seriously,  I am thrilled for you and I live, albeit vicariously, through you!

Go! See! Do! Enjoy… but please, while you’re out there, be our Ambassador 

Let people know that we’re at home, on the couch, taking a nap, because we have no choice!  We’re not at work, because we can’t work.  We’re a bit “dazed and confused” because steroid treatment was the only treatment we were offered; and without it, we’d perhaps be lying in a pool of pain, paralyzed, blind or half dead.

Let them know how horrible these diseases are!  Talk to them about the pain, fatigue, embarrassment and heartache that we experience every single day.  Help them to understand that these autoimmune diseases are REAL, they are devestating and that they affect everyone differently.

Let them know that YOU are one of the lucky ones;  managing to be productive and function, fairly normally, out in society!  However, let them know also, that it’s not easy for YOU either!  You too struggle with fatigue, pain, Pred Head, thin skin, loss of memory, moon face, weight gain, lack of self-confidence, etc, etc , etc.   The list goes on, and on, and on for you too!

Go! See! Do! Enjoy… but please, be our Ambassador! 

Don’t knowingly or unknowingly make us feel bad about ourselves or our ability to deal with our disease(s).

…because after all, we’re all in this together.

 

 

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6 thoughts on “Fellow PMR/GCA Sufferers: Please, Let’s Not Do This

  1. I just dont have the right words to properly thank you for your current “rant.” I am SO grateful. I have felt exactly what you describe. It is so difficult…and I continually and truthfully say how thankful and grateful I am to have vision, to not be dead.. I am honest when I say those things. But I am in pain, I have so many bad things happening, I am very very frightened. I had pain beyond what I can describe and my body, why – I don’t know – does not respond to pain meds. The symptom that I had that – after over a year of doctors not knowing what was wrong with me – I had double vision, went to my opthomologist and SHE realized what was wrong. Now, I still gett occasional double vision and each time it terrifies me. Im off track here on what I wantedto tell you- and that is simply: THANK YOU. Thank you so very much for what you wrote. Initialy, the prednisone put me on a “high” and I foolishly thought I had my life back…well you know the answer to that. Now, it seems that each day some new symptom appears and im just plain miserable and frightened. So…THANK YOU.

    Liked by 1 person

    1. Thank you Ann, I know your journey all too well!!!!! Yes, I too thought in those first few weeks, That I had my life back… HA! Silly us! Have they confirmed you have PMR? GCA? Both? How much Pred are you taking? Hang in there! If the pain get too bad get yourself to the GP or A&E; Don’t suffer in silence!

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  2. Oh my…….how you write! As I read this “rant”, I felt like you’d been inside my head and reading my mind with all of it’s doubts and shames and then anger! I too turn to FB in hopes of sharing additional insights on PMR/GCA. I too stop when I have more bad feelings than good ones! You are spot on and you’ve expressed it beautifully! I can’t thank you enough for the validation and I hope you shared the link to your blog on FB for others to read and maybe take to heart! Keep ranting!!

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    1. Thank you Vicki! I am so happy my rant resonated with you! I’m sure people don’t mean to be insensitive or say things that inadvertently hurt other people, but it happens. Thank YOU for validating my rant!

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