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Unequal treatment of FM with other chronic diseases STILL bothers me
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meg_k posted:
My mother recently sent out an email entitled "bad news" in which she revealed some sad developments in our family: my stepsister has MS. Now, Mom lives out of the country at the moment, and it's difficult for her to call, so I don't blame her for sticking upsetting info like this in an email message. It's sort of a necessity, unfortunately.

It was entirely horrible the way my stepsister found out she had MS. A *scary* seizure followed by an MRI that found the disease. This was alll totally out of the blue. She has three small children. I feel terrible for her, and I just hope that further testing confirms she has the relapsing-remitting type and that it will be responsive to the newer disease-modifying meds.

Sorry... here is where I start hurting and where it feels shallow to say it, but I felt like responding to my mom, "Did you send out a message entitled 'bad news' to the family when I told you I had been diagnosed with FM?" No, of course she didn't. Nor did she with my brother's CFS. So, why are these situations any different? Why does MS necessitate a family broadcast whereas Fibro and CFS do not?

Well, in fairness, MS can kill you while Fibro and CFS techically can't. I do get that, and I take that very seriously when I consider the possible road ahead for my stepsister. (Whom I love very much, BTW!) But, as I later pointed out to my mom, in what I hope was a moment of greater diplomacy (while still making my point!), if my stepsister does have the relapsing-remitting type and/or has a lot of remission and/or responds well to the newer medicines, she may very well have a better quality of life than a lot of people with FM. (I know, I try to stay away from unproductive "disease/suffering comparing" but I do have an unfortunate need to be taken seriously.)

As much I have gotten "used" to the idea that FM is a real disease, as much as I know it is, as much as I've tried not caring that others don't always treat it as such, I still have my weak moments. It bothers me that others don't treat it as legitimate as other chronic illnesses. I'm not trying to diminish the very real suffering or scariness of MS. Not at all! I am just asking for FM to have the regard it deserves as a majorly life-impacting chronic disease. And even within my own family, there appears to be a hierarchy.

Wish I could be the bigger person here, but for now, I'm not.

Meg.
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Anon_2912 responded:
I understand your frustration in all of this, however, you are correct in comparing medical conditions. We should not, because there will always be someone worse off the we are.

Personally, you should focus on YOU, not what anyone else thinks about your condition. You live with it, they don't.

Now I will say, I don't discuss my medical history with anyone but my doctor (occasionally with my husband), but other than that , it is a need to know basis, and frankly they don't need to know. I guess I am just a private person when it comes to medical issues.

No will ever understand what we feel, for everyone process pain differently. What I call a 1, you may say a 10. So I can't sit here and say "but it shouldn't hurt that bad", but it does for you, any more than you can say, "but you should not be able to work, or clean house", but I do.

I learned a long time ago that what matters is how you feel and think, NOT what anyone else's opinion is for everyone is entitled to their opinion. You just worry about YOU and pray for your sister.
 
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Anon_10089 responded:
Hello-

That is a tough situation and I think you're brave for bringing this up. I don't blame you for how you feel. I think many of us almost feel the same way ourselves: we should be tougher, we should be able to do more, we shouldn't feel sorry for ourselves, others have it worse, etc.

If people only knew the strength it took for us to get out of bed day after day, we would get a lot of respect.

I guess you could look for the positive and reach out to your stepsister. In some type of communication, you could let her know that although you don't fully understand what she is going through, you do know what it's like to have a chronic condition and know what it's like to have uncertainty. Hopefully, she'll understand you better when things calm down for her (not that she hasn't been supportive, but it will probably deepen her understanding).

I feel so horrible on so many days and I have for so long, that I don't really care at this point who believes me and who doesn't. It is annoying when I hear uninformed comments about FM but I don't even care about the title of "FM". All I know is that I have chronic pain and migraines and insomnia. My mom is supportive though, so I can't say I understand your situation there.

I do have to admit, though, that when a usually healthy person complains about a couple nights of bad sleep or an unusual aching back/neck pain, it's hard not to say, "Imagine that every day of your life!" But I remember that as much as I want compassion, so do they.

Again, I think this issue you bring up is actually quite a large one--probably for all people with chronic conditions. It is very difficult to accept having FM as it is, much less getting other people to accept it as a "valid" illness.
 
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maryalc responded:
Hi Meg, well, I for one think you are a very big person for speaking out! I've had this disease for decades, am 70 years old now, better at acceptance wit time and wisdom, and have gotten better over the years, at least with the chronic fatigue part. However, I do not think it helps one bit to have people tell us to diminish our pain, physical or mental anguish, to the benefit of others. I feel for you! What your mother did is hurtful, even if she is coming from societal ignorance. It seems to me we empower ourselves by speaking up. I would hope you can find a way within your family, to speak to her about how this made you feel. Not to diminish your step sister in any way, but to let her know what you have, and what we deal with. My doctor told me he thought one day CFS and FMS would be understood like MS. unfortunately we haven't arrived there. I do find after all this time, even when I tell people that at one point I was almost bed ridden, had a home help aide, and could hardly walk up our pretty flat driveway, they just look at me and then change the subject. It seems easier for people to grasp something that has a known label with information connected to it on the news, etc. I mostly read posts here, and rarely post, but I just tuned in to yours and had to speak out. God bless, and keep on keeping on.
 
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meg_k replied to maryalc's response:
Thanks so much, maryalc, for your comments.
 
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bette_kaffitz responded:
Meg,

We have an invisible, chronic illness. And, so far, this invisibility extends to the standard blood, urine, and radiological tests. We can't blame others for not understanding how much it hurts. After all, most of our doctors don't take us seriously. (Heck, most rheumatologists won't even SEE us.) Please don't let this lapse on your mom's part effect your relationship with her.

Your mom loves both of her daughters. She just understands your stepsister's illness more. She probably thinks of fibro as being "a few little aches and pains." After all, how bad can it be if it's your right shoulder on Monday and your left shoulder on Tuesday.

Now, let's put this in perspective. The "girl" who's been my best friend since she sat next to me on the bus that first day of 9th grade has had the "mild" form of MS since way back then. Like you, we are both 70 now. Julia is no longer able to drive. She uses a walker and has one of those "Rascal" scooters, too. My fibro waited 14 more years to hit when I was 28. I drive. I walk unaided (but with pain). We both had to go on SSDI in our 50's. Julia is legally blind. She thinks that I have more pain than she does. I know she has more disability than I have. Both of us are dealing with illnesses that are poorly understood. Believe me, it's not a contest.

And it will not be a contest with your stepsister. She is newly-diagnosed. Remember how confusing that was? She feels like h**l. She needs loving support. Can you give it? Are you that kind of person? Of course you are! Now go swallow any resentment you may feel towards your mom, and text or e-mail your stepsister. (By the way, it's time to drop the "step" and be a real sister. She needs a SISTER.)

Bette
 
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meg_k replied to bette_kaffitz's response:
Thanks for setting me straight, Bette. Of course you are right. I always find your perspective grounding.

Naturally, I will do all I can for my (step) sister, even though we didn't become related until my 20's and are not what I would call close -- we are certainly friendly. I know she is hurting, and I will be there for her. My resentment has nothing to do with her, or her situation.

Unfortunately, I have years and years of history of my mom invalidating/minimizing things I experience. So, this situation reawakens old hurts that I am still struggling to forgive. My childhood was all about taking care of her *many* needs. She is very narcissistic.

Example: when I told her I had FM, her immediate response was: "Hmmm, I wonder if I have it, too?" Hello, this is not about you for the next 30 seconds -- I am suffering here! I honestly do think she believes FM is real (maybe not as "real" as MS, but...), but for whatever reason she has difficulty focusing on the needs of others.

Anyway, part of my healing from all this is forgiving. I struggle with getting there. I work at it constantly. I know all lack of forgiveness does is make me hurt worse -- emotionally and physically. It doesn't punish her or anyone else. I am not there yet.

Signed, a Work in Progress. Struggling at times.
Meg
 
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mnjeepguy responded:
We truly do share so many struggles. Thanks for sharing.


Cory
 
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allybigcat responded:
I fully empathize with you. While I do have many people tell me that they've heard that fm is a terrible thing to have, and that they symapthise with me,I've also heard others tell of similar situations to yours.

I'd recall reading on another fm Bbs that while we with fm don't have visible disabilities , we still, nonetheless, are disabled. Folks who have other disabilities still have normal enevery levels and don't battle fibro fog! So, perhaps a person in a wheelchair who may be paraplegic may still have lots of mental and physical energy. The thing with fm, is that we DON'T. and there's the rub, so to speak.
 
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Anon_57995 replied to allybigcat's response:
I don't think FMS is so invisible!

People who have it look tired, dark circles under eyes from lack of good- quality sleep, and that just not well look.

Meg, it's good to read that you're going to release the resentment. Resentments are like drinking poison and expecting the other person to get sick.

I'll also bet that your step-sister with MS will understand your sufferings even more now that she's sick.

Blessings,

Me.
 
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booch007 responded:
Morning Meg,

This post is sad but true and your letters that followed showed how far you have come in understanding the mess we are in.

I developed Shingles a few years ago and went to the PMD not the neurologist I see for the FM/TPS. He jumped right away to give me an antiviral Rx and Percocet. I said are you sure this is shingles ??....the pain is nothing?? He said YES and you need the percocet.

I share this because the issue was so slight compared to the pain I have on a regular basis and had to fight so hard for my medical therapies.

Why? Because he saw** a rash...and learned that it is neurogenically painful......in the FM/TPS arena he still knows little and sees nothing. I look great....*well not when I get out of bed . It is knowledge for all and perspective for most.

I hope you continue to take care of you. We can't ask the world to get us, it is just too exhausting!

Take care.....Nancy B
 
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meg_k replied to booch007's response:
Thanks, Nancy B. I too have has Shingles since having FM. I am in my forties so my coworkers had a field day with that! I had a minor eruption but found it quite bothersome. Sort of the same irritation as a cold sore but worse and on my beltline. I agree it was not pleasant but not the worst pain Ive had. I, too, find it interesting that people can connect with that kind of pain but FM (often worse) is not as easy to "get". Even medical professionals. Sigh, Meg

PS Thanks for your kind words about the above.
 
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ajnsmom replied to booch007's response:
Very true, Nancy! The older I get, the more I realize that we each have to cope with life and make adjustments that others may not understand. I think I have finally let go of my need to be understood by certain folks. Lowering my expectations helps me not to be constantly disappointed.


Linda S. (Jax, FL0


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