Support: Groups and Online

Being diagnosed with MS was overwhelming. I was lucky enough to be surrounded by a special group of family and friends who care about me. And while I hate feeling like a burden, relying on my family and friends makes things a lot easier. 

I think my loved ones feel useful if they’re included in my care - even if it’s a small thing like moving a table or grabbing me a drink. Asking for help doesn’t make you less capable. It makes your diagnosis easier to handle so that you can focus on taking care of yourself. 

Unfortunately, only people who have MS really know what it’s like. I was lucky enough to find a support group, MS Fight Club - physically located in the East Bay of the San Francisco Bay Area and accessible anywhere online. Finding this support group, which I joined about six months after I was first diagnosed, was vital to my mental health and understanding of my disease. This diverse support group showed me the reality of MS with humor, perspective, and experience. MS Fight Club has an active online presence via Facebook and Twitter. Support is just a click away. 

If you feel you don’t have anyone to rely on, I urge you to connect with others with MS. They can relate to you like no one else can. Contact your local chapter of the National MS Society or other MS organizations. Search social media sites like Facebook. I found these sites helpful:

Wheelchair Kamikaze – Marc’s blog is amazing. He combines his own experiences with a multitude of information about MS research and news.

Life with Multiple Sclerosis – Travis Gleason gets down to the nitty-gritty of MS all the while maintaining a positive attitude.

You can find more at The Best Multiple Sclerosis Blogs of 2015. 

There are resources out there to help you build a new style of family and support system.

Support: Adam

My husband Adam is pretty great. Ask anyone. Ask him. Ha! We started dating in 1998. At that time, I knew something was not quite right with me physically. I actually told Adam on our first date that I had arthritis (which is what I had been told) because we were walking a lot and I had decided to wear cute shoes instead of practical ones and I needed a rest. He was automatically sympathetic and showed concern the rest of the night. As our relationship grew, he showed even more support. Everyone saw how much he was there for me and I saw and felt it too.

By the time I was diagnosed with MS in 2011 we had been together for 13 years and married for two years. I never once doubted that he would stand by me. I am very lucky to have him and he says he is lucky to have me. We work together to navigate the unpredictable and changing nature of this disease and life together. We know that we must communicate honestly and effectively. We respect one another.

In many ways, Adam has been forced into the caregiver role. I am dependent on him for a lot of things. While this can cause resentment on both sides, it is something we have grown to accept. You have to grow with this disease not against it. That goes for both of us.

That isn’t to say that we don’t have our fair share of disagreements, tears, and even full-blown fights. We are just like normal couples. We also make each other laugh. If you can’t laugh together, you can’t love. I think we work as a couple because we are, at the core, the same couple we were when we started. 

Guilt

When I was first diagnosed with MS I was relieved. I finally had an answer for what I had been dealing with for 10+ years. But when a chronic illness like MS comes into your life and the lives of those around you, it brings with it many emotions.

I remember doing a lot of things when I was first diagnosed. I had a lot of tests to schedule; I had a lot of prescriptions to fill; I had to learn how to give myself an injection. It was a flurry of things to do. Things to do. When I finally had a chance to sit down and let it sink in that I had MS, I was struck with many emotions such as fear, resentment, self-pity, and guilt.

I had always been prone to guilt. Quick to apologize and make things right. Let’s all be friends. But now there is a new guilt to deal with, MS guilt. Feeling guilty because you have MS is ridiculous. But I did and I do.

A lot of my guilt stems from the unpredictable nature of MS. It is so hard to keep a normal schedule when MS symptoms come and go as they please. I also question myself, “Did I do something to cause this disease? Or “Could I have prevented this progression?”

I feel guilty for what I can no longer do, for what I can no longer be. I think about how I was before. My former life. I'm sorry. Remember when I could take the stairs? Remember when I could walk? Remember a year ago? Remember five years ago?  

There. I felt guilty. And I will feel guilty again. I need to feel these things but then I also need to let them go. Sing a few verses of Let it Be and feel the lyrics. I didn’t do this to me. Let it be.