Do you friends, and or family make you feel like you are just not trying hard enough to beat this thing?

I have run into a rash of friends, and family lately that have peppered me with statements that sorta make me feel like I am just not trying hard enough.

Several friends, and some family members are really pushing me pretty hard about dietary stuff. Many think if I just switched back to a gluten free diet, that many of my issues would simply disappear. I have gone back to GF for the last 10 days just to test the waters. So far, I see no change. I was GF for years! the DD is a severe celiac and cross contaminates were making her sick. We were strict in this house for years. I still got MS even while on a GF diet. I had an endoscopy done recently, and asked for Celiac biopsies to be done just to be sure. All were negative and the GI dude told me I am clearly not Gluten intolerant nor am I celiac. Stop worrying. So, why do I let my friends, and family get to me?

Another group is on the "if you would just see my specialist!" They vary from person to person, but generally its a friend who wants me to see anything from a "native american healer" to some weird lady who is a 3 hour drive from my house, and will charge me $1000 dollars for the initial visit. Then she will load me up with suppliments to "rid me" of all of the unwanted build ups of whatever I have accumulated over the years to make me sick in the first place. If I would just go see their "healer" my life would turn around! isnt it worth a thousand dollars to make MS go away?!

Yet another group, wants me to try every new BS snake oil that comes along. I cant tell you how many bottles of Mona Vie juice I have been given. I have several of Mangosteen as well. I have a box full of suppliments that friends have brought along with the books that come with them, to explain how to change my life with just one pill!

Another group just wants me to change the way I eat. I have been given books and computer links to the "swank diet" the "makers diet" the "gluten free club" the "dairy free clubs" the "salt free lifestyle" The "eat more of this or eat less of that and cure what ails you clubs"

Im tired! I just want my friends and my family to acknowledge how hard I am trying! I take my shot everyday, even thru the side effects, even thru the not feeling well because of it. I attend every medical appointment scheduled. I do my OT, PT, and so forth. I eat an extraordinarily clean diet. I am organic, and eat tons of protien. I am very close to the makers diet. I am a good christian. I am a good neighbor. I am a good person, and yet, I have a gaggle of friends who just want to keep me busy trying "just one more thing"

When do you reach a point where your friends just calm down and let you have MS? Am I alone in this? Or do the rest of you get surrounded by folks who make you feel like you are just not trying hard enough to cure a disease that has no cure?

Sorry you are feeling bombarded...I just got an article someone sent me advising MS patients to get beestings to reduce symptoms...
don't I get stuck enough daily?

Keep your chin up, know that you're not alone in the fight, and just know that those with advice only wish to solve our problem for us...just like hubbies...

When I tried for years to get pregnant, people thought I was the cause with my mindset,self-imposed stress, not adopting (which they believed made you "relax" and get pregnant (urban myth - prospective adoptive parents have same rate of conception as non-adoptive people.) The drugs got me my twins. Now, if I'd just try harder!!! with my MS. They mean well but f@$% em all. Stick your fingers in your ears and smile.

well, it seems like all my friends abandoned me when I told them I have MS. I cant remember the last time I talked to most of them.


My boyfriend is the only one who stuck around. He doesnt tell me to try harder to beat MS or anything, but sometimes I do feel that he doesnt quite understand.

I always just say that my doctor and I have things well in hand, and I appreciate their concern. END OF SUBJECT. Any more than that and they will argue with you. They don’t understand. They never will unless (God forbid) they get MS themselves and have to go through all this kwap themselves.

I suppose there are worse things in life than having REALLY ANNOYING people who care about you, eh?

Dejibo - after a few years of being asked how am I feeling over and over and over again, the family members just let me be. Now I am just another family member with an illness/disease and not "special". It was nice when I got to that point where I didn't have to explain exactly how I was feeling every single time I talked to someone. Because no one in the family wanted to educate themselves about MS, I rarely get suggestions on what I should be doing to make myself better. Instead, they think I can't lift a feather, do anything physical and need to rest, rest, rest. That is until they need a favor from me, then my MS is no longer an issue to them.

I'm with Erin in friends or new people I meet disappearing when they find out I have MS. Maybe it's catchy... Wonder who I caught it from.

Then there are those well meaning people that think they know everything there is about my MS just because someone they know has MS. Because to them everyone with MS has the exact same problems and limitations and the exact same things will happen to me that happened to them.

being of native american heritage myself, i can tell you with absolutly no question.......we cant fix MS either

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.