I get the same thing for my Crohn's: try this diet or that clinic or the other drugs. I hear how "others were cured" all the time. I also get the "but you look so good" . . . even from my doctor!

What I have begun to tell them is, you know how your doctor gives you statistical percentages for response to treatments, etc? Like "85% of those treated thus and so will have a successful outcome" or "95% of those who undergo this treatment will remain in remission?" I simply tell them my doctor is sad to tell me I am in that 5-15% that are NOT successful. It is as if they simply refuse to believe that there are those for whom the range of treatments will not yield positive results. On our medical charts it is listed as "Prognosis: poor."


And now I am going through this all over again with what my neuro is calling transverse myelitis unless and until he finds any more evidence for MS. So if I never am diagnosed with MS, but have many of the same symptoms and issues . . .what do I tell those who ask? I still have a set of symptoms with no cure, which will progress or continue to cause rather unpleasant symptoms, and which pretty much messed up my golden years.

Had my severe ulcerative colitis actually been colon cancer, causing the same loss of my entire colon, explaining would have been simpler, and surgery would have been more or less curative. Same with my central nervous system . . .



I hear you loud and clear. I actually had a gastro cancel my colectomy on surgery day because "I looked good." I fired him immediately, called my surgeon and rescheduled, asking him to take over my care. In my life there is no room for egos driving my medical care . . . mine or anyone else's! It is through either illness and/or financial gain that you will find out who your friends ARE NOT!

Well, the truly funny part is I too was raised on an indian reservation and was surrounded by native healers. I have seen them! I got spiritual support, but they too understand MS has NO cure! I have seen the vitamin lady who wanted to charge me $1000 to tell me I am low on Vitamin D. I have seen the massage therapist. I am deathly allergic to bees!

The level of intensity in which they keep coming back is amazing to me. As if I just didnt hear them the first 100 times they said it. Seriously, they really have the answer, and I am being naive if I dont take their advice. They get so hurt when I say "my MD and I have it pretty well in hand for now, but thanks." In the early days most would walk away, and be happy with it, but now in a flare, I see a whole new intensity to the pitches. As if I have had it MY way for long enough now. I just need to let them rescue me from the clutches of this disease!

Most have a cure that boosts the immune system. Most have a cousin, aunt or neighbor who saw this or tried that, and was healed! I even went to the spiritual church that 5 were pushing. I went to the front! I allowed this strange preacher man to put his hand on my forehead and "cast the demon out!" guess what? my MRI showed a new lesion.

I had a call from one of these women last night. They want to go out to lunch today. I said "no thank you." she seemed hurt and pushed for "why?!" I tried to express I wasnt feeling well, and she actually told me, I wasnt trying hard enough! I just needed a pep talk, and a cheerleader. Get up! lets go to lunch! I told the DH that she is the first one being crossed off my new list of friends to let go of. Friends are so precious and mean so much to me, but many of them have become stressful and pushy. its time to let go of such things.

Thanks for giving me the space I needed to rant. sometimes you just need to preach it to the choir. I know you folks get it!

I know what you mean when you say that friends sort of “drop off the radar.” Recently I invited a bunch of my most-cherished, long-time friends, (that I don’t see enough, and don’t hear enough from) for what we used to call a Hen Party. It seems that they now assume that I’m unavailable, so I never get invites to the group luncheons any more. We all agreed that we need to keep closer contact, but their suggestion was that I be the “social director,” and that I be the one to make it happen. Sheesh! I am sure they don’t have a clue about how cold that seems to me.

I guess I'm better off in recluse mode anyway. I enjoy my own company, and I never get into arguments with anybody that way.

Fortunately, or unfortunately, I am not bombarded by silly advice from well-meaning friends. Aside for some initial stupid comments like:

"Oh MS is just the latest fad disease. If they can't figure out what's wrong with you, they call it MS." (This from a friend I considered one of the smartest people I knew.)

Or another comment: "Well, take good care of yourself, we don't want you to end up in a wheelchair like my other friend with MS."

Most of my friends are pretty quiet about it. I get the feeling they ask my H how I am doing. He always insists I'm "fine," whether I'm doing well or not. He generally does not tell them if I have had a relapse or some bad days.

Maybe that's why no one says anything to me. While I surely don't want to be bombarded, sometimes I feel as if no one cares how I'm doing. That's when I feel lonely and depressed about it.

My comment to those who have the gull, to think that I'm not trying hard enough.. ...

Ditto, Sal!

i feel for you dej. the first few yrs i had to do a lot of explaining and educating. i also printed off the typical MS info stuff and passed it out.
i guess i was lucky because almost no one did that to me.

i had one friend that pushed me to volunteer or get a PT job but after awhile she gave up when i was unresponsive. she probably still has her thoughts but she keeps it to herself.

i don't have much good advice. either give them written info or just stay silent and maybe they'll give up.

i also printed that "Spoon" article and that seemed to help too.

I sent out a mass email today saying "stop helping me!" I apologized for being so offensive, but lately I have been pushed into a corner. I love each of you, but I am no longer willing to discuss my MS. Please know i am not sitting home in my own waste with flies buzzing my head. I have a great medical team, and I am impressed with the care I have been receiving. From now on, if you want to be my friend, then...be my friend. I dont need a new nutritionist, personal trainer, dietician, or vitamin salesman. Lets stick to the weather, movies, current events, churches, children and so on...ok?

I ended it by saying that I knew many would be so upset that it would probably end the friendship, and I understood if they chose that. I am tired of being polite, friendly, and accomodating. I have MS! its not a mistake, or a false positive, or a misread xray or lab test. I really, seriously have MS. its not a diet issue, or a motivation issue, or even a spiritual issue.

it was a very hard letter to write, but I sent it out to a couple dozen folks. I bet half will walk away. I am better off if they do. I dont want to insult folks, but I just want my friends to be my friends.

Thanks for letting me vent here. you guys rock!

Good for you, Dej. I think you put it just right. I think your email is a positive step in clearing the air. Let the cards fall as they may. If you lose a friend over this, they weren't much of a friend to begin with. Good for you!

Good for you dejibo! Hopefully this will take a lot of worry off of you. Worrying about what others think is a terrible way to live and you should do better now.

gmi