My top 5 tips if you’ve just been diagnosed with MS
Whew, bummer. You’ve had weird symptoms. Maybe numbness, a tingling sensation in your arms or legs, or double vision. You didn’t understand what was going on, and, most likely, it took doctors quite a while to figure out what was wrong with you. But then you got the diagnosis: multiple sclerosis. What a big scare. Now you’re worried: You don’t know if or how this will change your life, and you imagine all kinds of scenarios. Many are frightening. Maybe you’re even concerned that soon, you will end up in a wheelchair.
But don’t worry too much! I was diagnosed with MS 22 years ago and have talked to many people with MS since then. Here are my top 5 tips for the newly diagnosed that I wish I had got when I got my diagnosis.
Yes, that’s right. Take a slow, deep breath in through your nose. Breathe in for at least five seconds. As you breathe in slowly, try to feel your breath fill your belly. Hold it for two seconds and then breathe out slowly through your mouth for six to seven seconds. Repeat until you feel calmer and more relaxed. It shouldn’t take long.
Take a slow, deep breath
Why you should do this? When we worry, we tend to tense up and our breathing becomes shallow. Because worry activates our fight or flight system, we take small, short breaths. When we do this for too long, we can hyperventilate, which can cause a host of symptoms that people might then attribute to MS, such as lightheadedness, weakness, and tingling. When you become calmer and more relaxed through conscious breathing, you can assess your situation from a more neutral and inspired perspective and not based on fear. The following tips will become way easier to implement.
Find the right neurologist
It is difficult to find your way through the jungle of MS treatments that standard Western medicine offers. Try to find a neurologist that knows MS well and regularly treats MS patients. I know from my own experience and from what many others have told me that it can be hard to find a physician you can trust and who knows his stuff. When I first got diagnosed, I was lucky to have a doctor who was an MS expert. Then I moved to Bonn and saw at least five neurologists in my quest for a new doctor to treat me. None of them knew about MS. They told me that no treatment worked, that I would just end up in a wheelchair, etc., etc. Every time, I left the office crying and never went back. After a few months, a physical therapist told me about a neurologist who had an excellent reputation. From the first appointment, I was taken seriously and felt well cared for. The search for a doctor is worth it. Your health is on the line. Trust your intuition and keep looking until you find the right person!
Become aware of the support that exists
When you have got an MS diagnosis, find support and all the information you can about how you can take care of your health! Maybe some people you know also have MS and can lead you to resources that can help you. Search the internet. There is a lot of very valuable information out there about diet, supplements, exercise and many other aspects of living with MS. Join a Facebook or other online group or find an offline support group that you trust, but make sure the people don’t bring you down. You don’t need anyone telling you that doomsday has arrived and your health will just decline from here. Find the right people! Everything is easier when you know you are not alone.
Listen to your body
When you pay attention, your body will tell you what it needs. You will realize what supports your health and what undermines it. Focus your awareness on the present moment and notice and accept your feelings, thoughts, and bodily sensations. Doing this is called mindfulness. When you are mindful, you will understand your body’s signals better and can act from that understanding to best support your health. Are you stressed? Are you eating nourishing foods? Are you exercising enough?
Being mindful is difficult, but it can be learned. If you are new to the idea, create cues that help you remember to be aware. Set an hourly reminder on your phone, or put a post-it note on your bathroom mirror. When the alarm goes off or you see the post-it, focus on your breath for a few seconds. Then turn your attention to your body. How are you feeling? Is there tightness somewhere? Are you comfortable? Once you are aware of those things, you will notice what helps you. You will make the connection between the food you eat and how you feel. You will understand how or if a supplement helps you. You will be able to guide yourself the best you can.
Don’t be ashamed
When I was first diagnosed with MS, I didn’t want anyone to know. Well, at least not anyone who should have known. Not my employer, not potential boyfriends, not strangers. I was worried that they would look down on me. That they would pity me. That they would not take me seriously anymore. Hiding my MS worked fine until I started having symptoms that didn’t subside. But even then, I tried to lie about what was wrong.
Over the years, I have seen many people act just like I did in the early years (well, probably 10 years ????) after my diagnosis. Quite recently, I have even met someone who did not want to tell an acquaintance who also had MS about their experiences because they were worried that “the wrong” people would find out. Twenty-two years after my diagnosis I want to shout out: Don’t be ashamed! There is nothing wrong with you. If anything, telling those around you about your MS helps you! Everyone has a network, and who knows? Maybe your boss will be the missing link who can guide you to the right doctor, or maybe your new partner is relieved to find out that they are not the only ones with a potentially undesirable health condition. ????
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