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25 Ways to Be a Good Friend to Someone With Dysautonomia

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Having a chronic illness is different than having the flu or a broken bone.  Some days are better than others, with no indication as to how long “good days” will last. What can help the most is an understanding friend. Dysautonomia Support Network asked our members for ways they wanted their friends to reach out and support them. We loved hearing these ideas and hope it brings inspiration to others for how to be a good friend to someone with dysautonomia.

1. “To do their own research on it and try their best to try to understand and help spread awareness.” – Amanda S.

2. “[My friends] don’t try to ‘fix’ me with the trends they hear about. They let me know it is OK if I can’t do something but they don’t stop asking. If we happen to go somewhere they watch me like a hawk to make sure I am OK, and when I am tired they are OK to leave no matter what we are doing. Most of all they just love me for me. I don’t have to put up a strong facade… they see me at my worst and at my best.” – Lin A.

3. “Remember that we still have feelings! Don’t stop asking us to do things just remember that sometimes we may not be able to or have to cancel at the last minute.” – Susan B.

4. “One way someone who can be a good friend is by not always wanting to go out but to stay in also ordering take out and just hanging out watching movies or playing video games. A day in is just as important as a day out.” – Doreen M.

5. “My friend arranged a rotation of friends to visit once a week in the morning when I am home alone. Such a wonderful treat. They pick up a key the day before so they can let themselves in if I am sleeping or too weak to move.” – Naomi S.

6. “Simply ask, ‘What can I do to help?’” – Lexi C.

7. “Know that I am not ignoring you. I may have to cancel plans, I may have to focus on me, or I may just be too tired to physically hold a phone to call or text.”  – Shannon B.

8. “The best things my non-sicky friends have done was to ask me questions to help them better understand. Several of them have also researched on their own, and it has made me feel as if they care enough to take the time! It was all overwhelming to me to understand, and I began to understand that for many people who loved me, it was overwhelming for them too. The key is truly basic understanding, and that starts with an open conversation.” – Alexandra Z.

9. “Remember I am still me. It takes dignity and strength to live with what we have in this society, but I’m still in here.” – Lauren R.

10. “If you are going to the grocery store, call me and ask if there is anything I need. I will pay for it. I recently had two friends give me free meals from two online food services. I won’t have to shop for the ingredients. Just check in with me to see how things are going.” – Lisa C.

11. “Be patient with me, I cannot do things the way I used to. Try to understand, if it’s hard for them to adjust to my limitations, imagine how I must feel.” – Cindy W.

12. “Please be understanding and patient when it seems like I am being unreliable or flakey. For example, I may have to cancel unexpectedly because I’m not feeling well, or I may not return a call because my brain fog caused me to forget. I care about you and don’t want this illness to make it seem otherwise.” – Alia G.

13. “If you have the time, help with cooking and cleaning. Something that takes a half hour could be a huge drain on a sick person, so the amount of time you put into it is appreciated disproportionately to the difficulty of the task. Last year a friend came over and cleaned my kitchen floor. It was amazingly helpful.” – Julie M.

14. “The best thing a friend can do is stick around and be understanding. Listen to me when I need to vent even though it may feel awkward for you. I’m usually not asking you to help me ‘fix’ things, I just need you to listen.” – Emi M.

15. “Please don’t tell me what an inspiration I am when I share my struggles with you. I want to feel like your friend and not your ‘good deed’ for the day.” – Ginny F.

16. “It takes a lot for us to accept our life the way it is and accepting our limits, so if we say we can’t, then respect it.” – Nicole J.

17. “Keep in mind this is not a cold that goes away with some medicine. Just using the phrase ‘When you are better we should…’ breaks my heart because that day may come, and it may not. My job is to focus on today, and what I truly need from you is support today.” – Adrianne L.

18. “Remind me that despite how it feels, my illness hasn’t made me invisible. That somehow I am still a little bit of the person I used to be, and that I still have something to offer a friendship.” – Rachel R.

19. “Make plans with the unstated mutual understanding that they may have to be adjusted at the last minute! Also, listen with open ears even if you don’t understand everything. Feel free to ask if you want but if not, have your ears open.” – Ronni H.

20. “To continue to invite me places, and perhaps be mindful of our limitations. Like if we’re planning on an activity that has lots of standing, be aware of seating.” – Ashton A.

21. “Having a small visit from a friend or even have them say hello from time to time and see how things are going. It’s so easy to feel isolated and to know you’re not alone really means a lot.” – Tammy P.

22. “Understand that my trips to the ER aren’t because I’m overreacting or want attention, they’re because I genuinely am scared and need the treatment I receive there. That my vitals aren’t caused by an anxiety disorder or that my symptoms are not all in my head. Dysautonomia is a real debilitating and serious illness.” – Lyssa A.

23. “Offer to come to my appointments with me because you want to learn more! It shows how much you really care about me and what I’m going through.” – Adrianne L.

24. “This is a real disease that is drastically life-changing. There are new rules and limits my body didn’t have before.” – Laura T.

25. “By reminding me to take care of myself, and things I can do to do so.” – Melissa H.

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Thinkstock photo by Kikovic

Originally published: April 5, 2017
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