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24 Things to Know If You've Just Been Diagnosed With ME/CFS

I posed the following questions to my online ME/CFS community: What do you wish you had known at the onset of your illness, that you know now?  What advice would you give to someone newly diagnosed with ME/CFS? Here are the answers from those who know the ropes best.

1. Rest, rest and rest!

“When newly diagnosed the most important thing to do is rest. Do not push through, do not overestimate your energy reserves. This allows for a better recovery outcome overall.” – Amanda S.

“This disease cannot be exercised away, and it cannot be ignored.” – Liz B.

2. Pacing and moderation are essential for reducing post-exertional malaise (PEM) – learn your limits and stay within them.

“Your energy is precious – protect it and conserve it in all that
you do.” – Deborah A.

“You will have to learn a new way of living. Know that you are most vulnerable on your good days. It’s so important to still keep pacing when you have them.” – Dianne T.

“Always rest more than you think you need to.” – Louise K.

3. Listen to your body. Understand and respect its signals. 

“You are the expert on your body, trust what it tells you, even if no one else believes you.” – Deborah A.

“LTYB. Listen to your body. Always.” – Shari B.B.

4. Put yourself first. Your primary job right now is getting well. 

“I no longer put on this brave face and act as a people pleaser. I stopped struggling so hard  to help others, because inside I was screaming someone please help me!” – Carol G.

“I’ve put taking care of myself, and my health, above all else.” – Pamela P.

5. Make self-expectations more realistic, reasonable and doable. Avoid apologizing for the new limitations ME/CFS imposes. 

“Accept that you are ill and have limitations. The longer you attempt to hold yourself to ‘normal’ standards, the more unwell you will become.” – Elle H.

6. You’re doing the best you can with what energy you have; let the rest go.

“When I couldn’t do things, I would feel bad. When I did do things, it would set me back. You just have to learn that it’s OK. Being sick is not what you want, but it’s what you got.” – Yvonne C.

7. Talk positively to yourself, and treat yourself with dignity and respect. 

“You are not less worthy of a human being because you are sick.” – Elaina G.M.

“Love who you are. You are still you, just mellower.”  – Mary Ann H.P.

“You need to become your own best advocate.” – Louise K.

8. Recognize and seek to eliminate self-defeating behaviors – like guilt and blame.

“This is a physiological illness. Don’t blame yourself for having it, or feel that you caused it in some way.” – Peter D.

9. Let go of the “shoulds.”

“Work on letting go of the person you want or think you should be. Otherwise you start feeling like a ‘failure’ for not living up to it.” – Elaina G.M

“Your ‘now’ is the standard for your life. Avoid as best you can comparing yourself to what you used to be, or to the lives of others.” – Christina B.

10. Let go of the need to accomplish constantly.

“ME/CFS showed me how steeped I was in our overachiever culture. A ‘we don’t do sick days’ kind of world. It was a hard mindset to change.” – Lisette B.L.

“Accept that your worth is not defined by what you can accomplish in this life.” – Elle H.

11. Learn to recognize and express your emotions honestly. Seek help from a trained professional if you are experiencing depression or need help with the grieving process.

“It is OK to say this is really awful.” – Deborah A.

“Go see a therapist who knows about living with chronic illness. Learn about vulnerability as a strength.” – Sarah D.

“Know that you will grieve, and it is OK to grieve the loss of your health. I fought the grieving process and it took so much longer to get to acceptance and find my way.” – Alex A.

“It’s OK to grieve, grieve and grieve again.” – Helen H.

12. Educate those you love about your illness. Know some may not “get it.”

“Some friends will not understand, but don’t let their misunderstanding control you.” – Dwayne W.

“There will be people who just can’t get it, or don’t want to.” – Carol G.

“We all have people that discourage us, but don’t let that be your downfall. You don’t need people that don’t believe you.” – Ellie S.

painting by the author of a person walking into a lit area from a purple area
By Christina Baltais

13. Continue to reach out to others: talk, hug, touch, love. Learn to ask for what you need (support, help, reassurance).

“Don’t be too proud to ask for help or feel like you have to ‘spare’ others from your pain and symptoms. It makes things harder than they have to be.” – Jennifer B.

“You’re not the only one suffering this way. Reach out and find others who have this disease; people who understand and can hold you up when you feel like falling.” – DS G.J.

14. You may lose some relationships. Seek to build and maintain new healthy ones. 

“If anyone stops being around you because you’re sick, you’re better off just letting them go. It hurts, but in the long run your life will be better with them gone. You’ll eventually replace them with real friends who understand and respect your fight.” – Jennifer B.

15. Delegate responsibilities when possible.

I used to do too much on my own which resulted in me permanently experiencing PEM. As a result, I’m no longer shy about recruiting help from family and friends with appointments, food and care.” – Beth M.

16. Don’t define yourself solely in terms of the illness.

“Do not make this disease define who you are. You were a person before ME/CFS. Yes, things are different now but please don’t make this disease everything you live, eat and breathe. It’s too much.” – Kristina O.

17. Develop a nutrition and lifestyle plan that best supports your individual body. Don’t force anything that doesn’t feel good or right. 

“We all have different situations, symptoms and reactions to treatments. What works for some people, won’t for others. Each of us has to learn the options out there and try them for ourselves.” – Peter D.

“Be wary of ‘miracle cures!!!’” – Tamara M.

“A lot of people come out of the woodwork with advice. Trust your own instincts about yourself and your body.” – Raw B.

18. Learn to cope with an often unpredictable future.

“Nothing is constant and all things change! So when the suffering is extreme I picture one foot in front of the other and repeat this too shall pass!” – Amelie H.

19. Learn about ME/CFS as much as you can. Continue asking questions, and seeking answers.

“Follow the newest research and be prepared to let your most recent convictions go in the face of new ones. This is  a very complex illness.” – Mavis D.

“ME/CFS turns you into medical detective, whether you want to be one or not. Oftentimes, you become your own best doctor.” – Christina B.

20. Seek a second opinion if you have a negative experience with a physician.

“Doctors don’t always have all the answers, and don’t know everything. Many certainly don’t understand this illness. It’s OK to go for other opinions.” – Cheryl T.M.

21. Focus on the things you can do, that make you feel good. Find joy in the small pleasures. 

“Best advice I ever got was from a CFS specialist who said ‘do something enjoyable every day.’ I feel better when I have something to look back on, or look forward to, even if it is very small.” – Jean P.

“Focus on exploring ways you exist with and through your illness. That person is valuable, and has something to offer to the world, even if it’s not in the way you expected.” – Elaina G.M

22. Give yourself credit for coping with a very difficult situation.

“We are all wellness warriors, with very little pomp and circumstance.” – Christina B.

23. Examine your perspectives and life philosophy – prioritize what matters most.

“Don’t wait to get well to enjoy your life, enjoy your life the fullest right here, right now. It changed my life when I stopped saying when I get better I want to…”  – Nancy B.K.

“ME feels like it is an end to life but it isn’t. It is the beginning of a new life. Learn (even though it is hard) to live it the best you can. Help others and practice gratitude whenever possible.” – Lorilee L.

24. Laugh! Retain your sense of humor as much as possible. 

“Give yourself permission to laugh.” – Kristina O.

“Just because you’re a patient, doesn’t mean you can never be happy.” – Fatima H.

We hope these suggestions help you along the way, as you take life one slow step at a time. Remember if you ever need someone to talk to, you can find us all here.

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