“But You Look So Good!” (How to face the world due to your MS)

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Dealing with MS is like dealing with the devil. Not only the course of MS which is really unpredictable that gives us a very heavy burden, but also how to manage your emotion facing other people who don’t (or can not) understand what MS is and how MS could really affect us will give a special burden.

The disease itself, with its unpredictable type and time of onset, may ‘destruct’ us both physically and mentally. All of MS sufferers know that it is quite hard to receive the fact that we have to deal everyday with many unbearable pains, paralysis, numbness,  fatigue/lassitude, visual disturbances, unbalance coordination between brain and action, unbalance coordination between thinking and speaking, cognitive disturbance, hard-to-control the unusual mood swings (quick-to-anger, quick-to-be-sad, irritable, very sensitive, cranky, etc) , or we also have to deal with a severe mental depression which sometimes could lead some of us to commit suicide.

And there is no more tiresome and uglier moment than receiving messages, responses, or a ‘deer-look’ from people around us which choose to hold their own definitions about ‘chronic illness’. I mean, it is usual for the most people to come to the imagination that somebody with chronic illness should only be in his/her bed, looks pale, got a high fever, etc., while MS disease is sometimes has the silent/invisible symptoms.

In other words, just when we’re hoping that people around us get what we’re saying about our difficulties due to MS, we’re likely to hear the very common response from family members, friends, colleagues, and boss: “But you look so good!”, “You look too good to be sick”, “Nah, come on! You can’t be sick!”, “Oh, please don’t be a spoon-fed!”, “Oh, I think you just want to get attention from me”.

For MS sufferer, this kind of responses could be the double-edged sword that stabbed right into the heart. It is so hurtful. Well, on the one hand, it’s nice to know that others think we look good. On the other hand, that is a very tough comment to hear when we are feeling really crummy – exhausted, numb, mentally depressed, or weak as wet pasta. Interpreting the underlying message of those comments are even tougher. Is the person trying to reassure and encourage me? Or is the real message a bit of a dig: “You are not sick, so why aren’t you doing all the things I need you to do for me!”

Being accused as a spoon-fed (spoil person) is also something that could make us hurt and burst into tears, because we know that we are not a spoon-fed. We know that we had already forced all of our efforts to keep alive and keep trying to live as normal as we can do. It is indeed very hard for everyone to deal with the disease.

In this kind of circumstances, what should we do then? Angry to them will never be the best solution. I think the best strategy for responding to this comment is probably to try and sort out the underlying message before giving a response. If the person is an acquaintance or someone with whom we don’t have a close family or working relationship, we may just want to say “thank you” and move on. If, however, it’s someone close to you, who needs to understand that there’s more to MS than meets the eye, you may want to consider the following options:

  1. “I’m afraid that what you see isn’t always what you get! I wish I felt as good on the inside as I seem to look on the outside. Unfortunately, MS has a lot of symptoms that don’t show”
  2. “Thanks – but today’s not one of my better days. This MS lassitude/ fatigue/ dizziness/ blur vision is really killing me”
  3. “Well, maybe I do look good, but the heat is really getting on me – I feel like I can hardly move. Would you mind if I change the air conditioning temperature into 16 – 18 degree?”
  4. “Thank you for your encouragement, but my MS depression is quite different from the usual mental problem. If we talk about MS mental problem, we don’t talk about insanity or craziness. We only talk about the brain and/or nervous system damage which caused unbalance in everything. It is always like to try controlling the uncontrollable. This unexplainable feeling just snap me up, and sometimes my emotion just ups and downs without being able to figure out the reason. I can only know that I need someone to talk with – someone who can help me by filling my mind with positive and relaxing thoughts and to keep me distance from the desire of committing suicide.”
  5. etc.

The key here is that we have to be the teacher for them, so decide how much information you want to share, and be prepared to explain some of the less visible ways MS can affect us.  And the most of all, the best ‘prescription’ for dealing with MS successfully is always hoping for the best, and also prepare for the worst.

In addition, please contact your National MS Society to get more help if necessary. In case of Indonesia, you can contact to Indonesia Multiple Sclerosis Group Kanya Puspokusumo at multiplesclerosis_indonesia@yahoo.com to get the necessary mental support.

For other countries, please visit http://www.msif.org/national_support/ to get the location and contact person of your National MS Society.

Kanya Puspokusumo

President of Indonesia Multiple Sclerosis Group IMSG

Online Translator of Multiple Sclerosis International Federation (MSIF) London, UK

Administratrice de la Rubrique Sclérose En Plaques – Conseils sur la SeP, France)

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