Things I wish I’d known when I was diagnosed:
There is life after diagnosis. It will be different, some of it will be hard, but much of it will be great.
You can take your time learning about MS. If there is something that scares you, ask a friend to read up on it and educate you. It can be a lot easier to hear if it comes from someone you trust and knows how to share the information with you. When you’re ready, if it’s your thing you’ll be doing plenty of your own research.
Your friends and family are being affected in ways you can’t imagine. Don’t underestimate what they are going through. Give them time to grieve with you and for you, assess the impact on their own lives as well as yours, absorb and adjust.
All your relationships will change. Take it as it comes. As some people go out of your life (whether your choice or theirs), wonderful new friends will come in. They will be the ones who are there for you, who support you, who know how to listen, and who appreciate a good laugh.
It’s important to get a second opinion regarding both the diagnosis and treatment protocols. I have a friend who, six years after her diagnosis and starting treatment, just found out from a new neurologist that she doesn’t have MS after all. (Amazing, wonderful news for her. Unfortunately, this doesn’t happen too often.) Yes, protocols are fairly standard. But advice concerning the choice of A, B, C or R drugs can differ. As we all know, doctors often seem to have relationships with different drug companies, and this seems to affect their drug of choice. Other protocol choices include whether you should be on regular steroid treatments, Tysabri, antidepressants, and other medications. Gather all the information you can from the best doctors you can find and use your best judgment.
Look into other modalities that will complement your medical treatment. Massage can help keep you loose and minimize spasticity. Yoga, chi gong and tai chi are all wonderful tools to destress, stretch, and keep yourself as limber as possible. Meditation has been shown to benefit the immune system in all kinds of ways. (See my August 2nd blog, “What, Me Worry? Stress and MS.” )
Stick to your regular routine as much as possible. You’ve had enough of a shock for a while.
While you’re going about your regular routine, plan adventures to look forward to. Whatever rings your bells—a weekend trip or gathering of old friends or a trip around the world. Don’t expect to be as active or energetic on the adventure as you might have been in the past; plan downtimes and a realistic schedule. Then, if you are feeling good on the trip, you can do more—and that’s the icing on the cake. Start planning the adventure after that before you embark on the first one.
If you don’t have a solid support system, get thee into therapy. Even if you do have a great support system, having a professional to share your most private thoughts and fears with for as long as you need to is priceless.
Hire a professional to help you plan your financial future. Be as realistic as possible. It’s a cliché, and a good one: plan for the worst and hope for the best. Work as long as you can because it provides income, keeps your mind occupied and sharp, gets you out of the house and among people. Apply for disability when the time comes, but don’t count on it to see you through. You need your assets and your options.
It’s okay to cry and be afraid. It’s okay to say to a friend, “This is the pits.” If you need reassurance, ask them for it. If you don’t need that comfort, ask them to just be with you in that emotional place as long as you need them to be. At the same time, don’t lose sight of the possibility that help is on its way, or that your MS will turn out to be manageable, or the probability that life still holds good things for you. Don’t lose hope. If you feel yourself losing hope, ask for help. It is there. You don’t have to go through this by yourself.
People who love you don’t love you because you’re healthy. They love you because of who you are. At the same time, MS can be as much of a challenge and frustration for them as for you. Give them space if they need it.
Cut yourself a lot of slack, but also expect much of yourself.
There are researchers out there working on effective treatments, researchers like those at the Myelin Repair Foundation. There is hope and it is up to all of us who care about finding those treatments to support the research organization of our choice. If not us, then who will do it?
Keep a sense of humor. MS isn’t funny, but trust me, eventually life will give you reasons to smile and laugh again. With luck, in savored moments, you will even find joy.
What do you wish you’d known when you were first diagnosed?
Things I wish I’d known when I was diagnosed:
There is life after diagnosis. It will be different, some of it will be hard, but much of it will be great.
You can take your time learning about MS. If there is something that scares you, ask a friend to read up on it and educate you. It can be a lot easier to hear if it comes from someone you trust and knows how to share the information with you. When you’re ready, if it’s your thing you’ll be doing plenty of your own research.
Your friends and family are being affected in ways you can’t imagine. Don’t underestimate what they are going through. Give them time to grieve with you and for you, assess the impact on their own lives as well as yours, absorb and adjust.
All your relationships will change. Take it as it comes. As some people go out of your life (whether your choice or theirs), wonderful new friends will come in. They will be the ones who are there for you, who support you, who know how to listen, and who appreciate a good laugh.
It’s important to get a second opinion regarding both the diagnosis and treatment protocols. I have a friend who, six years after her diagnosis and starting treatment, just found out from a new neurologist that she doesn’t have MS after all. (Amazing, wonderful news for her. Unfortunately, this doesn’t happen too often.) Yes, protocols are fairly standard. But advice concerning the choice of A, B, C or R drugs can differ. As we all know, doctors often seem to have relationships with different drug companies, and this seems to affect their drug of choice. Other protocol choices include whether you should be on regular steroid treatments, Tysabri, antidepressants, and other medications. Gather all the information you can from the best doctors you can find and use your best judgment.
Look into other modalities that will complement your medical treatment. Massage can help keep you loose and minimize spasticity. Yoga, chi gong and tai chi are all wonderful tools to destress, stretch, and keep yourself as limber as possible. Meditation has been shown to benefit the immune system in all kinds of ways. (See my August 2nd blog, “What, Me Worry? Stress and MS.” )
Stick to your regular routine as much as possible. You’ve had enough of a shock for a while.
If you don’t have a solid support system, get thee into therapy. Even if you do have a great support system, having a professional to share your most private thoughts and fears with for as long as you need to is priceless.
Hire a professional to help you plan your financial future. Be as realistic as possible. It’s a cliché, and a good one: plan for the worst and hope for the best. Work as long as you can because it provides income, keeps your mind occupied and sharp, gets you out of the house and among people. Apply for disability when the time comes, but don’t count on it to see you through. You need your assets and your options.
It’s okay to cry and be afraid. It’s okay to say to a friend, “This is the pits.” If you need reassurance, ask them for it. If you don’t need that comfort, ask them to just be with you in that emotional place as long as you need them to be. At the same time, don’t lose sight of the possibility that help is on its way, or that your MS will turn out to be manageable, or the probability that life still holds good things for you. Don’t lose hope. If you feel yourself losing hope, ask for help. It is there. You don’t have to go through this by yourself.
People who love you don’t love you because you’re healthy. They love you because of who you are. At the same time, MS can be as much of a challenge and frustration for them as for you. Give them space if they need it.
Cut yourself a lot of slack, but also expect much of yourself.
There are researchers out there working on effective treatments, researchers like those at the Myelin Repair Foundation. There is hope and it is up to all of us who care about finding those treatments to support the research organization of our choice. If not us, then who will do it?
Keep a sense of humor. MS isn’t funny, but trust me, eventually life will give you reasons to smile and laugh again. With luck, in savored moments, you will even find joy.
What do you wish you’d known when you were first diagnosed?