I have now lived with MS for over 15 years and while I am definitely not an expert, I have come up with a little list of things that I wish my Doctors had told me when I was first diagnosed. You may be someone who is new to an MS diagnosis or you may know someone who is and this list could provide some clarity or answer some questions you may forget to ask or don’t even know to ask. After all, MS is a confusing and often times frustrating disease and if you were like me, you may not have even heard of it when you are told you will be living with it for the rest of your life.
- There is no quick fix for MS and treating it can be complicated and costly. It varies from person to person, and sometimes treatment has to change as symptoms do so be flexible (even though you will probably lose all your flexibility). Don’t be afraid to change things up if you are not having results.
- You will probably be bombarded with stories about other people with MS from your well-meaning friends or family members, including stories about someone they know with MS who hiked Mt Kilimanjaro or ran the Boston Marathon or you may hear about the ones they know who can’t get out of bed anymore. But know that MS is different for everybody, no good can come from comparing your disease to someone else’s.
- 50% of people diagnosed with Relapsing Remitting MS will likely move to a new stage of disease called Secondary Progressive (SPMS) within 10 years and 90% will transition within 25 years. This secondary stage is best described as MS without relapses, but current damage will continue to worsen, and it will be tricky, and it can be scary. But it’s definitely not the end of the world.
- Some of the medications used to manage your symptoms can and often do cause long term damage. I didn’t even think about long term effects until I inquired about excessive weakness (even though I have been doing the same if not more physical activity over the last 5 years), increasing brain fog, trouble finding words and confusion (although I am no longer working in a stressful environment). Such has been the case for me with a muscle relaxant (Baclofen) that I was on for over 15 years to deal with muscle spasticity. What I didn’t realize was that this medication can cause a steady weakening of muscle tone. In addition, long term use of Gabapentin (used for neuropathic pain and a medication that I have been on since my diagnosis in 2005) may cause long-term effects, including memory loss, weakened muscles, and respiratory failure. These are things I didn’t know (and yes, I should have looked into the long term effects better but I didn’t) however my point is that you should do your own homework before starting these medications because you should evaluate the choice based on what your long term goal is for your disease. I was grasping for ways to keep my normal life going so my goal when diagnosed, was to work as long as I could and to keep myself at a high functioning level so I could be a present and involved mother and wife. Those were my 2 goals which I realize now may have been a bit short sighted because as I have learned, you can do a lot by managing your disease with alternative methods including lifestyle and nutritional modifications (it is a full time job doing so though). I remember a conversation with my Neurologist when I asked her about these side effects when she told me, you wanted to keep working so we did what was needed to allow that to happen. Now that you are not working, we can make changes to your medications. And you know what? She was right – the moral of the story is be careful what you wish for and do your homework. I’m not saying I would have made a different decision, but I may have looked into things a tad more closely.
- You will likely make plans and cancel them A LOT. And sometimes, your friends will stop even asking. But guess what? The ones that are meant to be in your life, will withstand the test of your disease and those that don’t, aren’t necessarily supposed to make the cut. But sometimes, it’s not about you at all – some people (even your family or friends) don’t know the right things to say to you so they just don’t say anything, so don’t take it personally. Lean into whatever support system you have, because sometimes you need all hands-on deck to thrive with a chronic illness.
- MS can sometimes be an invisible illness and people may think you are faking your disability, but you aren’t. People can make a lot of assumptions, and you may need to educate those close to you, just know that you aren’t losing your mind, you aren’t imagining things and what is happening to your body is real. MS can change from day to day, from hour to hour and from minute to minute so don’t let someone else’s lack of knowledge about this disease cause you to be insecure and self-conscious, you will have enough of that going through your head without any help from anyone else.
- You may experience some personality changes – some of which may not for the better. You might be short tempered, overly anxious, crying one minute and laughing the next and frustrated beyond belief. But….you WILL get through it!
- You will spend time (and for some people, it will be a lot of time) being unsure of what the future holds but know this, the chaos that MS causes can also settle and you will even have moments when your new normal feels peaceful and right. Yes, an MS diagnosis means life as you know it will no longer be the same, but I encourage you to keep looking for the silver linings because I guarantee you they are there if you open yourself up to them. Your disease can lead you to self-discoveries that enrich your life in ways you never thought possible, like changing the way you think about life’s priorities for starters! At least it has for me and my hope is that it will for you too!
Hopefully you or someone you know will benefit from this list and for those of you with your own chronic illness – let me know if there is anything you would add!