If I Could Get Better, I Would
“Have you tried this diet? Maybe you’d be better if you worked out more. Have you tried using more weed? I heard mushrooms are helpful, can you try that? I just read about bee venom, maybe that would help you?”
How many times have you had someone suggest some sort of miracle cure to you? OK, forget cure, even just something they believe will be helpful? I don’t know about you, but I’ve heard (and continue to hear) these types of sentiments a lot during my life with MS.
I like to believe that everyone that has a suggestion for how I should live with my disease has good intentions. I want to believe that they truly have my best interests in mind. That they are offering up these tidbits of advice to improve my life.
I’m sure I can see myself doing the same thing (hey, I probably have and haven’t even realized it) if they had a problem. It should feel nice to have someone care about me enough to offer up suggestions on how to better my life, right?
It feels a bit insulting
The thing is, getting suggestions and advice from others doesn’t usually feel that good to me. Do they think that I don’t keep up with the possible treatments? That I haven’t tried many of the legitimate options available to me? Do they think that I want to be this way?
It’s upsetting if they think I am not doing everything possible to fight this disease. For someone who fights so hard to battle his illness, it sometimes feels a bit like a slap in the face to get advice from others. If I could do something to get better, I would, and it’s hurtful to think they don’t think that. I am not sick because I want to be.
Another upsetting aspect of unsolicited advice is that they are telling me about something they heard because that’s what they primarily associate me with: my illness. No one wants to be thought of for their illness, so sometimes when someone goes and offers up a suggestion, it makes me think that this is all they think of me. It feels like my life is summed up entirely by my illness. I want people to think more of me than just my disease.
I do enough work
Another reason getting advice from others is troubling is that my illness already consumes so many aspects of my life, and I don’t want it to take over my relationships, too. I do work hard to manage my illness and I need a break from it, so it’s often the very last thing I want to discuss with friends and family.
I want those I surround myself with to be a reason to keep fighting the good fight, not necessarily for them to be part of the fight. I feel the best thing someone who knows a person with MS can do is to treat them like you did before they got MS.
You can help
If you really want to help someone with MS, just be there to listen to them and make sure they know you are there to listen. Do your best to not make suggestions unless asked. Don’t try to fix us, just be there for us.
If you have MS and you are tired of people offering up solutions, try to take a step back and remember they are only trying to be helpful. I keep trying to remember that and I know it’s not easy, so consider talking to them about this issue the next time they do it. Or maybe just email them this article!
Thanks so much for reading and feel free to share! As always, I would love to hear about your experiences in the comments below!
Were you misdiagnosed with something else before receiving a MS diagnosis?