Coping With An MS Diagnosis And What Helped Me

Everything can feel urgent when you’ve just been diagnosed with an incurable disease. Remember that you’ve likely had MS for years. You may have increased symptoms and be in the midst of an exacerbation, and you don’t know if your symptoms will dissipate or be your new reality. My advice is to try to relax. I know, it’s easier said than done.

I remember the pervasive fear I had of not knowing if what I was doing was unknowingly worsening my MS. Wondering how I was going to learn to live with MS and what my future now held overwhelmed me. The lack of control over my body rattled me. It felt like I’d been sucker punched.  While I looked the same on the outside, my waking thoughts were now consumed with, “I have MS.”

Coping with an MS diagnosis is a lonely experience, and I can’t think of any other life lesson that prepares you for it. When I was diagnosed with MS, I’d already lived through and recovered from a 110 mile per hour impact car accident, I’d lost my mother in a plane accident, I’d experienced and healed from family drama and trauma that affected me deeply.  And yet, being diagnosed with MS required me to pursue healing in a new way.  The threat was within me, and it wasn’t a one-time event.  This was something that would continue and likely progress. I lost all sense of control and the stability of feeling like I could trust my body. My mantra became, “I don’t know how I’ll learn to live with this, but it will happen.”

My path to making sense of things and being at ease with them will differ from others. All I can share is what I see in hindsight helped me and what I use today to maintain my health and sanity.

• If you’re able to, find a counselor you like and see them regularly until you feel like you’ve found some stability.  My thought process at the time of diagnosis was that I wanted to have a counselor on deck that knew me and would be available if I needed them in the future. The person I saw validated my feelings, allowed me to vent on things that might have injured relationships if shared with the people involved, and helped me cope with a huge life shift.  I can’t stress enough that the counselor needs to be a person you trust and feel comfortable with.  Don’t push it.  If it doesn’t feel right, find someone else.
• Look to people with attitudes about adversity that inspire you. For me, two exceptional people who gave me hope were Kris Carr and Cami Walker. Kris Carr has successfully lived with Stage IV liver cancer, used diet and attitude to keep progression at bay, and was living a full, productive life. Cami Walker wrote the book, “29 Gifts,” and describes how she found a way to accept MS and see her value in life through giving.
• Non-profit groups like MSAA and NMSS provide a wealth of information on MS symptoms, treatments, and medications. Search their sites for specific symptoms you’re experiencing, and try the suggestions that fit with your lifestyle.
• Patients Like Me, www.patientslikeme.com, is a site that allows you to create a profile and track your symptoms and have access to other people with MS in an anonymous format.  This site is terrific for learning about other people’s experiences with medications, knowing methods for their success in treating symptoms, and tracking your own health. Entering medications, symptoms, exacerbations, and general health information is invaluable for monitoring my own health. It’s important to know that this information is used to help researchers try to further the understanding of diseases, assist in treatments, and hopefully find cures.  Some people aren’t comfortable sharing this information, but I’ve found it to be useful and confidential in my experience.
• Local MS Self-Help groups are a tremendous resource for building relationships and sharing information. These groups involve meeting people who have experienced my challenges and can share their advice. While the information they provide is helpful, I find that meeting people who have lived through the challenges I’m facing and thrived despite symptoms that scare the heck out of me is a huge benefit beyond the suggestions and advice.  These people inspire me and reduce the fear I have for potential disability.  They provide an understanding ear when I need to talk, they encourage me when I’m nervous, and they share the humor in living with MS. 
• Facebook groups that focus on people with MS are a more recent addition to my ongoing education and inspiration since they didn’t exist when I was diagnosed.  These groups may be public or require you to be added to a closed group.  Join to the level that you’re comfortable and that won’t jeopardize your career.
• Accept that you’ll likely need a medical team, not just one doctor. In addition to your primary care physician and MS neurologist, it’s helpful to have additional specialists available. When you’re newly diagnosed, you don’t need to fill out the team immediately.  Just know that one provider isn’t going to be an expert on every issue you’re experiencing, and they won’t be able to help in every instance.  When your neurologist or primary doctor can’t help you with something, consider adding people with expertise in other areas like a physical therapist, counselor, naturopath, or urologist. Tell every provider you see about every issue you’re having. I’ve been pleasantly surprised when my physical therapist was able to solve issues I thought my neurologist would solve but couldn’t.

Be cautious when interacting with people who have MS such as in groups like Patients Like Me and Facebook, and try not to take it personally when people are harsh or say something that feels hurtful.  It helps me to remember that other people in these groups are struggling, may be experiencing depression, and may just have terrible communication skills. None of these resources and sources of support will fill every need I have in dealing with my MS. It’s helpful to learn which ones help me in different circumstances depending on my mood and needs.

Overall I don’t expect everyone in my life to understand what I’m going through.  Instead I have a menu of resources and a list of people I turn to for support depending on the issue.  It’s taken years to create this list, and I keep adding to it.

I realize that my suggestions may be overwhelming.  I’ve only taken on one thing at a time since my MS diagnosis.  I’ve read suggestions and followed what made sense at the time given my biggest issue. I also discard comments or things I read that don’t fit with my experience. 

Other than increased numbness, fatigue and clumsiness, the only thing that changed immediately after my diagnosis was that I knew what was causing my symptoms.  It helped me to remember that my health hadn’t changed; only my knowledge of it had.  It took me time to learn what helped me, and giving myself permission to take time to adjust helped ease the stress.