Have you told anyone yet that you're getting tests to rule in/out MS?

[Catlover80]

Do you talk about your symptoms, bloodwork, mri's and such with family, friends and your partner?

So far, only my boyfriend of 10 years knows how serious my symptoms are. He's also completely aware of tests being done. I've also informed him that if I do have lesions, tumors, whatever shows up on mri or in bloodwork that he's not allowed to cry. Not sure if that was a cruel thing to say, but I told him that I prefer to do research and be proactive in treatments, no matter what the diagnosis is. Crying seems pointless to me and will make me only feel worse about the situation.

So have you discussed any of this with loved ones? I told friends and family 5 years ago about not feeling well. That went horrible, most people tend to not react well to chronic illness. The responses were either:

1. Sad, forced puppy dog eyes.
2. "I just don't get what's wrong with you?"
3. Some constantly questioned what my symptoms are
4. Family admitted that they think it's all in my head, nothings wrong.
5. Some made suggestions like "cut out gluten" probably just celiacs, "it's probably just stress-related" "you need more water and veggies in your diet"
6. "how can you be tired, you just slept for 9 hours"
7. "well you look good" (??? are we supposed to look bad?)

I admit that I'm more worried about how others will respond to a diagnosis. I just want to be treated the same as I have been in the past, although I somehow doubt most people are incapable of acting that way. I might just keep everything a secret until it's noticeable. I've been able to make excuses so far, like saying my dragging foot is from uncomfortable shoes. I also use the "I have a migraine" excuse to get out of family and friend events when I'm really fatigued or symptoms are flaring up.

[Snowdrift]

"Just" celiac? Celiac is pretty tough to manage. A friend of mine was critically ill from celiac complications before she got her dx. This is a major downside of the anti-gluten fad: it normalizes in people's mind a very serious and difficult to manage health condition.

Anyway.

Yes, I have. I mostly refer to it as my "neuro weirdness" but I have told some people. I'm not a secretive person by nature, but even if I was, I just have too much going on in my life to be able to hide in my corner.

I am a single mom with little kids, I work more than full time, and I'm clinging to to the dream that I'm a distance runner.

My online group of running buddies knows what's going on because I want/need the support in coping with new difficulties running and being active.

They also came to my rescue by chipping in to cover my deductible/co insurance this year, so I can continue to work on finding a dx, and have access to meds and supplies.

(OF COURSE when discussing raising money for this, I was very clear that I don't have a dx, that I need the money to find a dx and to treat symptoms. Not going to use a scary disease I may have to ask for help.)

Other people in my life know because I need more help with kids than I used to, and my work attendance has gotten very sporadic, both because of symptoms and appointments.

Fortunately, my job is very flexible, but they would be less patient if they didn't know a reason for last-minute schedule changes and more than occasional flakiness.

My significant other knows, because he is a medical professional and has been super helpful in helping me navigate the system and coping with symptoms.

Some of these people know that MS is a possibility, along with other spinal-lesion-causing conditions. Bug day to day, it's "neuro weirdness."

[Special Kay]

I'm not a limbolander, so I hope you want mind my replying to your message.

I did not tell very many people I was being tested for MS and I have not ever told my family (mother, father, siblings, etc.) that I have MS. I've had it now for almost 9 years. I also have not told anyone at work.

I told my partner and a few close friends who I knew would be supportive and helpful. I did not tell my family because I did not 1) think they would be supportive; 2) want them to worry; and 3) because I consider my health issues a private matter.

In my experience and that of other friends who also have MS, no one regrets not having told someone. Many people I know regret having told.

Look at it this way, if you do have MS, you will have the rest of your life to tell people. It's a complicated decision and not one to be made under duress (which is what being tested for MS is, after all).

Also, I'm lucky that I don't appear unwell, so it's easy for people not to know there's anything wrong with me. That won't always be true, and when the day comes that I'm obviously impaired, I'll of course disclose.

[Snowdrift]

I have to wonder if maybe your experience of no one ever regretting not telling might be colored by your own opinions and experiences, and how you have perceived others' opinions?

While I haven't been dx-d with MS, currently my doc thinks it's something else entirely, I definitely do regret having kept my difficulties so much to myself for the first 6-8 months or so. Obviously, this is largely because of circumstances. I have little kids. When I'm unwell, or on those special occasions when I've had to go to the ER, it was difficult and awkward trying to explain-but-not-explain, and it caused my family pointless worry. When my work hours became very irregular because of so many doctor appointments, my boss was pretty irritated.

While as I mentioned, I'm really not a secretive person, one doesn't really want to be the kind of person who over-shares vague or "unmentionable" health worries and complaints absent a diagnosis or specific way to approach it, so I didn't.

I should have. Sooner than I did. I struggled through trying to keep up with everything I used to do, maintaining the facade, with so much extra time lost to doctor appointment, three ER visits, a hospital admission, and endless hours of telephone calls dealing with insurance and such between managing symptoms and trying to find a diagnosis and all the while trying to pretend nothing was really wrong.

It's been a lot easier since I've let the people in my life know a bit about what's been going for the past year.

I realize I am very lucky in that I have a boss who is unusually accommodating, but now that she knows that my odd hours and occasional random short days are due to health concerns and not just flaking out, she's perfectly ok with it.

I don't doubt that if one doesn't have significant or obvious impairments, there's no point in risking subjecting oneself to others' preconceptions. But diagnosis or no diagnosis, dealing with new impairments and difficulties is hard, dealing with multiple medical appointments and insurance companies is hard. Trying to hide those things is just one more unnecessary hardship, and in my case, it did no one any good, and caused my family and friends a lot of worry.

[Special Kay]

I have to wonder if maybe your experience of no one ever regretting not telling might be colored by your own opinions and experiences, and how you have perceived others' opinions?

A valid question, and I probably overstated it. But in two separate occasions, I have had people with MS come right out and tell me that they wished they had done what I did and not told so-and-so. In one case, it was someone who regretted telling her mother.

Of course, as your post makes clear, everyone's situation is different, and I of course didn't mean to offend anyone.

I'm not sure if I could have done what I did if I had children or if my life was unusually disrupted by the medical process. When I said I have not told my family, I was not talking about husband/kids, but my own elderly (somewhat unwell) parents and my siblings who live in other states.

Personally, it has been a huge comfort to me to be treated "as normal" by others. I know that won't always be possible, so it's precious to me while it still is. Does it make my life harder sometimes? Sure. But it's a deliberate decision on my part and one I can reverse at any time by disclosing.