This was for a multiple sclerosis newsletter, but could easily apply to stiff person syndrome as well

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10 Things That Someone with a Chronic Illness Might Like to Hear
By Gay Falkowski

As a person living with MS, youíve likely got a long list of things that well-meaning friends and family have said to you that youíd like to never hear again ó such as the dreaded ďBut you donít look sick.Ē You know what you donít want to hear, but have you thought about what you do want people to say to you? Here are 10 suggestions from others who have a chronic illness.

1) I wish I knew what to say, but I care and Iím here for you. Ultimately this is the truth behind any other heartfelt statement so itís a good all-rorund sentiment to express when nothing else comes to mind.

2) I believe you. This one of the most powerful things you can say to someone with a chronic illness such as MS that has invisible symptoms. Itís validating and comforting.

3) Can I bring you food? Or is there a chore around the house I can help with? Doing the dishes or putting together even a simple meal can be a huge energy drain when fatigue sets in, so when others take care of these tasks it can be a big relief.

4) I know how hard youíre trying. This acknowledgement can be a really big motivator to someone who feels as though no one understands how difficult it can be to push through the tough times.

5) Donít feel bad if you have to cancel plans at the last minute, I understand. Guilt from having to cancel plans because of not feeling well, or not having the energy, is common for people with MS. When someone expresses understanding, itís a great relief.

6) You look so good, but how are you really feeling? When someone says you donít look sick, most of the time they think theyíre paying you a compliment. Itís nice to hear someone acknowledge they understand you may look good but not feel well.

7) I hope youíre as well as possible. No matter how hard you try to Ďbe well,í a chronic illness limits your well being. Good wishes that give a nod to those limitations take the pressure off and let you know they Ďget it.í

8) It must be difficult to be in pain or feel sick all the time. The idea is to let someone know youíve really heard what theyíve told you by reflecting that back to them in your own words. When you actively listen to someone, they feel validated, which is important to people with a chronic illness.

9) I just wanted to check up on you and let you know I miss you! After being out of the loop for a while, itís nice to know that your friends miss you and think of you ó and that they want to be around you whenever youíre up to it.

10) Youíre doing everything you can. This one can be such a relief to hear instead of another piece of unsolicited advice. Guilt from feeling like you should be doing more is common, so having someone recognize that you are doing everything you can is uplifting.