Pls help. Am I being bitter or ????

[harmoniesdj]

Today a very prominent person in my town revealed that they have Multiple Sclerosis for the last 10 years. This was widely covered by local TV, newspapers & press conference. Now the person has become an advocate of MS & is promoting awareness of the condition by sponsoring a fundraiser. BUT the person also has scoliosis since a teenager & had spine surgery. They have/do not speak publicly about scoliosis nor promote social fundraisers for awareness of our disease.

Can I trust someone with my welfare who denies one health condition & its fellow patients while hiding another serious condition until symptoms become so noticable that a press release is necessary to cover themselves? Why do I feel so cheated & bitter that the person has ignored the scoliosis community but is now being an advocate of the MS condition? Where was/is the advocate when it comes to scolosis? And should I publicly call the person on the discrepancy (an action that may have no results or possible negative results for them....or me)? Am I over reacting?? Pls help for right now I am emotionally upset. Thank you & God bless this community.

[Spencer's Dad]

I understand your point, but....

Ok, look, I think you you probably are over reacting just a little bit here for several reasons which I will explain.

First, with respect to this person publicizing MS over scoli, the truth is MS is going to kill this person, but their scoli is not. I know its harsh to say it this way, but I don't think the truth should be sugar coated in these cases. You see, Spencer's disease (leukodystrophy) is also progressive degenerative, like MS, and it will probably take him from us within the next 10 years. And those ten years, like MS, will be a period of ever decreasing ability to function until Spencer is in a comatose state and on a vent full time. His scoli, on the other hand, is not going to kill him. In fact, Spencer only has scoli because of his Leukodystrophy. And so you might ask, why are we active in the scoli community and not the leukodystrophy community? Well, we are active to the extent possible for us in the Leukodystrophy community, but Leuko is an orphan disease. It is so rare that it does not get even as much attention as scoli does. And so I have yet to find a forum like this one in which I can participate as much as I am able. And that brings me to my next point.

Second, everyone copes with their challenges in different ways. Some people find strength in being public with their conditions and challenges. Other people choose, as is their right, to keep their scoli (or other diseases such as MS) hidden. There are many reasons why people choose to do this. Some are embarrassed. Some are afraid of what others will think. Some are afraid that they will be discriminated against. Some believe others will lose trust in them if they have a disability. And some just honestly don't want to burden others with their problems. There is a huge stigma associated with MS. People know that a person with MS is going to have severe limitations eventually and this is going to affect how people treat them. I, myself, have known people who were fired from their jobs only because it was known that they have MS.

Third, I frimly believe in the old addage, "Don't judge another until you have walked a mile in their shoes." You probably don't know what this person has been through over the past few years and so I would be hesitant to call this person out publicly, until you knew there was some sort of actual wrong-doing, or legitimate public grievance.

Fourth, put your energy where your cause is. It sounds to me like your cause is scoliosis. So let this person advocate MS and you advocate scoliosis. Don't waste your energy pursuing something that is negative or will only have negative consequences. Who cares if this person does not want to talk about their scoli. You do want to talk about it and so you should. Find ways to help others with scoli, or to educate people about scoli, and let this person do what they want. The scoli cause needs you much more than this person needs you to out them, so let it go and get busy helping your own cause. The truth is, this person is only in your circle of concern anyway and not in your circle of influence. So concentrate on what you can actually influence and let the rest go.

So good luck and keep the scoli faith.

[CHRIS WBS]

Very eloquently expressed I might add! I have two cousins who suffer with progressive MS, and when I get down about my scoliosis, I think of them and all they have endured. It's an absolutely devastating disease that does claim its victims.

Chris

[green m&m]

Spencer's Dad,

You pretty much said what I did type out, but failed to post last night... and I guess I closed my window and lost it all. My scoliosis is also secondary due to a progressive genetic disorder I have (neurofibromatosis type 1, also an orphan disease) and it always goes before scoliosis if I get a chance to spread awareness. It's not because I don't care about scoli awareness... it's hard for one person to try to spread awareness on multiple disorders and expect full attention from the audience.

I wanted to add, that the person may not be thinking about scoliosis on day-to-day bases because the treatment they received essentially stopped any progression so they are no longer thinking about it. If they had MS for the past 10 years I think we can safetly assume it takes up some part of their day-to-day life.

[harmoniesdj]

Thank you so much for your time to reply to my post. You have given me the needed perspective that my emotions clouded.

Spencer's Dad - you are so kind to eloquently explain how my energy is misplaced......and you are definitely correct.

Green M&M and Chris - your supportive perspective complemented what Spencer's Dad explained. Thank you, thank you. I feel your support will help me to grow stronger both emotionally & mentally. I will consciously rechannel my thoughts & feelings to a cause where my energy is needed. Your responses gave me that ability.

Keeping you all in my thoughts & prayers with gratitude.

[Frosty]

Well it's upto them whether or not they talk about their ailments.This person has certainly been unlucky to have two 'serious' conditions. MS though is a far worse condition to have than scoliosis although I recognise that a minority do have very serious problems with their scoliosis.

[Nancy T]

This is an old thread, but I just saw it.

Just for the record, MS is NOT in itself a fatal disease, except for a very rare variant of it and in extremely rare cases where the breathing mechanism, for example, is affected.

Some people with MS eventually die of complications RELATED to the disease, such as urinary tract infection, bedsore infection, and even suicide due to depression, which can be a symptom or consequence of the disease and/or its treatments.

However, most people with MS will die of something else. On AVERAGE, it takes about seven years off your lifespan.

Most people with MS have some disability, and some have severe disability. But many people with MS live a pretty normal life with mild or very little disability--they are just less visible publicly. MS severity is all over the map.

Someone severely affected with scoliosis might be much worse off than someone mildly affected with MS. It all depends.

Nancy T.
with mild scoliosis that doesn't bother me, and having been suspected of having MS--which is/was much more scary, it's true!