Ten things I wish I’d been told when I first learned I had MS:
1. Don’t assume you will be in a wheelchair next year. There are different kinds of MS and MS is different for every person. You may never have another symptom or you may face great challenges, but your life will be what you make of it. There are great strides being made in research and a cure could be just around the corner.
My Story: I was 26 the day I was told I likely had MS. I was 36 when I was diagnosed. I was 46 when my MS showed itself to others in an unusual gait. I was 53 when I started using a scooter more than a walker.
I was pregnant with my first child when I had my first symptom. I had two more children and it wasn’t until the youngest was in high school that I couldn’t do some things for him that I wanted to as a parent. I’m still happily married.
2. Don’t freak out. MS isn’t contagious nor hereditary. Research suggests there is a genetic susceptibility which only slightly increases risk within families. Children of those with MS have only a slightly greater chance of getting MS than anyone else.
My story: Over the years, my view of how my MS affects my kids has changed. I used to feel bad for my kids that they have a disabled mom and there are things I can’t do for or with them. A good friend at the time shared with me that her mom died when she was very young and that she often wished she just had the presence of a mom. I also have to remember that since everyone has a challenge in life, my kids will have challenges too. I just don’t know what they are yet. I am now able to see what my kids have and are learning because of my MS and realize there are benefits for them as well.
3. Do allow yourself to grieve. A diagnosis of any kind means you have lost a part of your health. Any loss of health changes the way you view yourself, your life and your future. Loss requires mourning. A chain of emotions or a flood of them at the same time is normal and necessary. Coming to terms with a diagnosis takes time. MS isn’t the worst thing that could happen to you, and it isn’t the best. It isn’t a stop sign in life – it’s just a detour. Realize that everyone struggles with some challenge in his/her life – some challenges are visible to others and some are not. Dealing with challenges, like anything else in life, is a balancing act of being realistic and being hopeful.
4. If possible, choose who you share your diagnosis with. Depending on the circumstances, there may be no other option than for people to know, but in some cases it is a matter of personal choice. Not everybody has a need to know and long-term consequences should be considered before you decide who to tell and when. Keep in mind that you can’t UNtell the news; so when in doubt, don’t.
A. This is especially important if you think it may jeopardize your employment. There are good articles online about whether or not to inform an employer.
My story: I wasn’t working outside the home when my MS was discovered. I was just shy of the required points for social security benefits, though, and wanted the option of going back to work, so I limited the number of people I confided in to leave my employment options open.
B. When you do tell people, choose your words wisely. Not everybody needs to know everything. Depending on age and relationship, tell people only what you want them to know. People usually accept whatever explanation they are given. This gives you a great deal of control over others’ reactions and how many questions you are asked.
My story: Even now, I am careful about who I tell what simply because I want to choose when to answer questions. I prefer the word “condition” to disease and usually offer a simple explanation like “my legs are weak” instead of using the words multiple sclerosis. Children are eager to ask and appreciate simple answers like “my legs don’t work well”.
5. Arm yourself with information. Knowledge is power. There is a ton of information on the internet. Limit yourself to reputable websites. I think the best are hospital sites. There are national organizations that offer information and support, fund research and send out publications. The main ones are:
(1) National Multiple Sclerosis Society (NMSS) – www.nationalmssociety.org This is the more conservative organization. It offers a lot of information online and by mail.
(2) Multiple Sclerosis Association of America (MSAA) – www.msaa.com This organization does more research on alternative treatments and helps people with barrier-free housing and mobility help.
(3) NARCOMS – www.mscare.org/cmsc/Home.html. This organization collects and reports information on many people with MS. They send out surveys twice a year to those who are willing to fill them out and they publish the results. Their publication is more technical and dry, but the most recent and informative I think.
There are also international organizations which have good information. There are a lot of resources and there is a lot to digest when reading about MS. I suggest reading main points now so if a symptom arises you will recognize it, but not bothering with details unless something affects you. I receive 3-4 publications a month and choose when to read them (time of day or where I am emotionally). The purpose of reading about MS is to gain information and alleviate fear, not increase fear; so be aware where that line is for you. You won’t have every symptom that MS can cause.
The companies that make disease-modifying drugs sponsor good seminars/teleconferences. Those for newly diagnosed are informative and worth participating in. If you attend one, I would suggest having someone with you if possible. Contact your local chapters of NMSS and MSAA. They will send you information.
6. Find a good doctor and be a good patient. MS specialists are a luxury big cities offer. If you live in a smaller city without the option of an MS clinic, your appointments may be just once or twice a year and the travel time invested is a trade for the expertise, understanding and resources that will be made available to you. Make the most of your appointments by keeping a problem list or symptom log, writing them down with dates as they happen and are fresh in your mind. It is not fun to do because nobody likes to dwell on unpleasant things, but it will help you (and your doctor) a great deal. Write down questions as you think of them so you have a list to take to appointments. Write down answers during your appointments in case you can’t remember later what was said. If someone is willing go with you, be thankful for an extra set of eyes and ears.
7. Take care of yourself. Eat healthy, stay hydrated and be cautious of temperature. Our nervous systems are like electrical systems – they can slow down when affected by heat. Becoming overheated can bring on temporary symptoms. It is a phenomenon called “Uhthoff’s”. It stops when your body cools down, so if you start having symptoms or symptoms become exaggerated when temperature might be the cause, do whatever you can to cool down.
My story: When overheated, I find a cool place to lay down. I don’t know if biofeedback helps or not, but it makes me feel better so I use it at those times. I use a hand-held mist fan (called a Squeeze Breeze and available at Wal-Mart) to keep me cool in the heat. It stays in my car so it is everyplace I am. There are cooling scarves, vests, and other products available to help keep cool.
8. It will likely be recommended that you start taking a disease-modifying drug. That means learning to self-inject. The injecting “guns” are incredibly helpful and, believe it or not, the injections become routine with time. Ask others for tips on what makes self-injecting easier for them. Keep an updated list of medications with you in your wallet or purse so if you have an emergency it is available.
9. Think ahead and choose all things wisely. Being prepared is just smart. If you buy a home, choose something that is accessible or could be easily adapted to be accessible. If you buy a car, choose one that is easy to get in and out of. Build meaningful friendships with people who will stick by you when you need them. Know what your spiritual beliefs are and get involved in a church/community. If you’re able and you have funds, take classes, go on that trip now and put it in your memory bank to draw upon later. Enjoy life and appreciate what you can do.
10. Ask questions. There aren’t any questions too big, too small or too personal to ask the right person.