Well, it has officially been six months since my diagnosis. My partial anniversary. In the MS world, folks seems to consider you a newbie for the first couple years at least, so it doesn’t mean much from that perspective, but for me it was an event of sorts – a hurdle I have managed to overcome. Although not wiser, I definitely feel more knowledgeable. I have sucked up MS related information like a sponge and can rattle off a disturbing amount of information. I am doing my best to keep up with the research that is available and periodically troll through scientific papers that I only partially understand just to get an idea of studies and outcomes.
A few pieces of advice:
1 – Register with the National MS Society. Reach out to an MS Navigator. I registered for this program as soon as I received my diagnosis and was amazed by the knowledge these folks can provide. They started by sending me a list of doctors, email newsletters and connected me with the local chapter. I even received reading material via mail including a book for the newly diagnosed that was a huge help. Understanding the disease itself even in a basic way and hearing as many times as possible how different the experience is for each MSer is so very important early on.
2- Ask for help when you need it. And you will. Thankfully my husband stepped up without any requests from me and took over tons of stuff around the house that I was having trouble managing on my own. I asked for concessions at work and they were kindly granted (As a caveat here, I work in a small environment. For a larger employer, you may wish to seek advice and be very familiar with your rights before approaching an employer). I found a counselor when I need one. Although I continue to be slightly frustrated with some of my limitations, I am not afraid to ask for and receive the help I need.
3 – Find a good support group. The National MS Society has a listing of local chapters and they should be able to direct you to a support group meeting near you. If you don’t have any luck there, ask your neurologist or MS specialist or call a social worker through your local hospital. Before attending make sure you know if care partners are welcome. Some groups and events are aimed for patients only while others are only for the care partners. Everyone will have their preference, but since W has been so involved since the beginning, I wanted to find a group that would allow us both to attend.
4 – Assuming you are a newbie, try to find a support group that is geared toward the newly diagnosed or those who are minimally impacted even if it is not the closest one to you. I was grateful to learn this fact early on from an honest social worker who explained that some of the support groups are made up of folks who have had the disease for many, many years and/or are severely impacted. Keep in mind that disease modifying therapies are relatively new medications, so many people with MS today went years without therapy. I think if I walked into my first support group meeting and found most people in wheelchairs and/or experiencing and discussing significant cognitive issues, it would have been a very different experience. I would have honestly been scared, a bit depressed, and less likely to share.
5 – Connect with others. I felt so very alone during my diagnosis process. Don’t get me wrong, I have a hugely supportive family, a wonderful husband and even have remarkable support at work. All the same, I was the one going through the process and experiencing the symptoms and no one around me could completely understand that. I’ve only just started to get over this by connecting with others through email, facebook and in person at events. It’s funny because I am a bit of a hermit yet in this, I seem to need and crave interaction with others like me.
6 – Although I encourage connecting with others, choose those connections wisely. Early on I joined every facebook support group I could find. It didn’t take long to realize that the world is filled with many people who, when faced with an obstacle in life, respond negatively. Don’t get me wrong, some negativity is natural. I was depressed for quite some time and focused on the worst case scenario. Then I brushed myself off with some help from W, my family, and a counselor and am trying to move on. There is a huge difference in that and being negative all. the. time. It isn’t healthy and it definitely isn’t helpful to be around. So, I started departing facebook groups one at a time. Some I left completely, others I just turned off so I am still a member, but I don’t see posts unless I go looking for them. It helped.
Six pieces of advise from one newbie to another in honor of my six month anniversary. It’s not cake, but it is my current version of a celebration and I hope others may find it useful.