MS can be hard enough for those who live with it to understand at times, far less trying to explain it to those who don’t. As my MS is mostly invisible, it can often feel even harder to convey just how difficult it can make my life.
However, one effective way I have found of communicating exactly what it’s like is to explain it like this:
Imagine one day a stranger invades your home, locks the door behind themselves and tells you they will never, ever leave. Their manner is menacing and intimidating and over the course of the months and years that follow, you will never be quite sure what they will subject you to next; one day they may hide in the garage, the next they might shadow you all over your house, tripping you up, pushing you around so you pinball off the walls, trip over your feet.
They place obstacles in your way and seem to be able to reach right into your brain and scramble your words and thoughts. They appear to be adding sedatives to your coffee so that you are permanently exhausted. Your grasp weakens and cups and plates drop through your hands with startling ease.
The fatigue and pain make it difficult to reach out to family and friends and you begin to feel isolated at home, cut off from the world. You are so busy fighting this stranger and anticipating their next move, and all the time they seem to be growing in size and gaining even greater powers to wield against you.
You begin to seriously consider giving up work, and anyhow your employers might be hinting that you are no longer up to job without putting any support or reasonable adjustments in place for you. Perhaps your partner is beginning to get fed up with this invisible threat you keep telling them about – but they cannot see - that they pack their bags and leave. You have never felt more alone.
You might try to talk to the people who know you best, but to them you are the same person, just a little more tired than usual, a bit more distant. MS can push you into dark places and the more we bring its invisibility alive for other people to understand, the more we can access help and support. We need to speak up and be heard.
When I was diagnosed 16 years ago, I felt alone. It was like a black hole inside of me, I felt down. It was not easy for me and also for my husband. We had no clue how living with MS was going to be. But we were and are not alone, the world is full of people living with MS, and unfortunately, lots more people who are not informed or ignorant or simply said not able to understand what’s going on.
Below are some examples of misconceptions I have to deal with on a consistent basis:
• When you mention that you suffer from fatigue and they reply “Oh, I get tired too”
• When you are wearing a lovely outfit, but on the inside you feel unwell, so you mention that to someone and they reply “oh, but you don’t look sick”
• When you are struggling to keep your balance, and someone suggests that you might have had too much to drink
• And of course, people assuming that you are not sick you are just lazy and suggest seeing a psychologist
Having to deal with these misconceptions is exhausting and sometimes it can hurts because people don’t understand what having MS really means.
Today I have 5 tips to deal with those uncomfortable situations:
1. Learn to ignore. Some people are not worth talking to. They are too closed minded to ever understand MS. They are not able to act sensitive and just see the visible symptoms not the invisible symptoms we all experience. When I was first diagnosed, I found it hard, because I would explained and discuss my symptoms, and these people wouldn’t really listened. I really wanted to explain my condition to them but all I would get in response was jargon. Ignore these people because there is no benefit in explaining for you in. These people are ignorant, so you should be ignorant to them too keep a distance and get on with your life.
2. Inform yourself. Know your MS better. To know what’s going on in the body and with MS means you need to understand the ins and outs of the disease. Knowledge helps you make the right decisions and helps with explaining MS to others. Use real world analogies when explaining your MS and people as they will find it easier to understand as they can visualise what you mean.
3. Be quick-witted. Sometimes I have those unbalanced days. I am walking like a drunk person although I didn’t have any drinks. There are people (co-workers, friends) who will stare and say things like “look at you, it’s the morning and she is already drunk”. I remember the first time I heard that. I was upset and speechless. The second time I answered, “you can’t blame me, only one cocktail in the morning is not enough for me”. I know that this can be hard to say but do it with a smile and let them know with your eyes how silly they are being. You don’t always need to explain yourself. Sometimes humour is the best answer. Honestly, it was very hard at the beginning, I was trembling at the first time. But it helped. It stops people thinking those thoughts and they respect you more for seeing the funny side.
4. Ask for support. You should never be ashamed to ask for support or to say no to something. There will be days where you can’t do everything on your own. There will be people who live with MS who will never want to admit that, but you have to protect yourself to not be overwhelmed, because stress and MS are not good friends. So please be careful. When there is too much on your plate, ask for help. There are always people who are happy to support you and help you out. They are those “life savers” who are ready to help at a moment’s notice.
5. Be self-confident. You should not be ashamed of your MS. Being more self-confident will help you to deal with ignorant people, explain your MS better, ask others for support, and help steer your discussions with HCPs. Life is not over when you get your diagnosis. It is your job to be the boss of your life, so you need to take control of it.
Starting your journey with MS is a challenge. Make sure, that the people who are very close to you are well informed. There are many materials around to help them to understand your condition. The MS community is amazing. They are always happy to help out, and I highly recommend connecting with them, you can find some information about being a part of the MS community here