At first, a chronic illness diagnosis can be overwhelming. The questions stack up (What doctors should I see? Which sources of information are the best? What medication is right? Do i need to learn more about the medications available to me?) and there isn’t a guide or one-size-fits-all solution to find. As clichéd as it may sound, chronic illness is a journey, and diagnosis is the proverbial first step on that road.
Luckily, you are not alone. Many have already started their journey and there is enough wisdom and to go around. In fact, speaking with other patients is powerful. According to a recent survey we conducted, learning about the experiences of people who are living with a condition can be just as helpful as having the facts about treatment options.
Armed with this info, we decided to ask our community: What’s your advice for those who have just been diagnosed with a chronic illness?
Here’s what they had to say:
- “You’re not alone! Illness is insanely isolating, but if you find ways to remind yourself that others ‘get it’, you’ll be better off for it. At the end of the day, no matter what you’re going through, try to be gentle with yourself. You are going through so much physically and emotionally. Allow yourself to feel what you’re feeling, and realize that no one should have to be this brave or this strong. No matter how you cope, know that you are making it through your day as best you can and that will always be admirable and more than enough. – Alyssa, Lupus
- “Read The Spoon Theory and share it with your family and friends. My hubby used to ask me how many spoons I had left. It was cute and very helpful. Join a support group. It’s an amazing way to meet like-minded people. Through groups I have gained lifelong friends… We have so much in common. Good luck and don’t be too hard on yourself. Tomorrow is always a chance for a better day.” – Kimberly, Ankylosing Spondylitis
- “Be kind to [others] with invisible diseases. You never know what struggle they are going through.” – Jolyn, CRPS
“The most annoying phrase my doctor kept telling me when I first got diagnosed was, ‘Eventually you will be okay.’ …and it was insane for the first 18 months but eventually she was right. You will be okay and you’ll become stronger than you even comprehended was possible. That’s powerful.” – Jessica, Lupus
- “Don’t let yourself become isolated from society due to your illness(es). Make sure that you go and participate in events, even though you would rather be in bed. When you become connected with people and your world you’ll be so much happier and maybe even feel a bit better.” – Laura, Lupus
- “Try to stay positive! Understand from the beginning that it is a journey and it can be frustrating at times. Finding the right medicines, learning about the disease, finding what works for you…it’s a process. Nothing is ever a quick fix and there will be a lot of gray areas. Try to learn and understand the disease as much as you can. It takes time to come to peace with having a disease. It is a rollercoaster of emotions, but you can get to a good place. I have been diagnosed for 11 years and am able to live a normal life. Stay optimistic!” – Natalie, Ankylosing Spondylitis
- “Every case is different, and something that works for one person doesn’t for another. When you try something that just doesn’t work, don’t give up, move on to the next thing.” – Robin, CRPS
- “You will most likely go through stages of acceptance similar to the stages Elisabeth Kübler-Ross describes in a person who [has experienced loss]. Not because it is a terminal disease but because it is life changing. The most important thing I have done is adapt how I do things so I can continue to enjoy life as much as possible. Use adaptive aids and just change how you do things. Also, recognize that there is a fine line between doing enough and doing too much. ” – Kimberly, Ankylosing Spondylitis
Do you have a chronic illness? Check out opportunities to share your health story here, or join Health Stories Project and we will let you know about ways to participate in videos, studies, blog posts like this one and more!
- “Try to be gentle with yourself. Give yourself the space to grieve your old self. Find a [doctor] who treats you as a member of your team. One who gives you treatment options or tells you why this is the best treatment and how you may be able to taper off (or take less) in the future. Try to be proactive about your flares. Do you notice something that causes them? Sun, stress, exhaustion? Try to avoid those things as much as possible, no matter what it takes.” – Jennifer, Lupus
- “Don’t give in to the disease! Keep moving forward in life. Don’t let life pass you by.” – Jim, Ankylosing Spondylitis.
- “One of the biggest challenges is that most people don’t understand. Build your medical team… You may need [many] specialists. I have a rheumatologist, neurologist, a neuro ophthalmologist, a GI, a hematologist, a pain specialist, a nutritionist, and of course my primary physician. I carry a binder with my doctors’ information whenever I go to the hospital. The most important thing about my team is that they communicate with each other about my case. I trust my team, but they have to work together!” – Jennifer, Lupus
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“It may not be as scary as it seems. There are so many things you can do to deal with the pain and prevent long-term issues. Research and learn everything you can. You are your own best advocate!” – Kerry, Ankylosing Spondylitis
- “Support groups are great for getting out of yourself and your own head. Chances have it, someone else has it worse than you do. It can be good to keep things in perspective.” – Avreey, CRPS
- “The search for answers is now over! You have your diagnosis and you can now research and implement ways to slow the progression of the disease. [Chronic illness] is not a death sentence but the beginning of a new lifestyle.” – Dana, Ankylosing Spondylitis
If someone is newly diagnosed with chronic illness, my first advice would be that it’s ok to feel whatever they are feeling. When something happens that turns your life upside down, changes your plans for the future and how you feel about yourself, you will probably experience a rollercoaster of emotions from anger and sadness to hope, disbelief and resentment. Some people will tell you to either ‘never give up’ or ‘accept the way things are now and move on’. You are entitled to all those mixed emotions and take the time you need to create a new picture of yourself and your life.
This is amazing advice. Thank you for sharing it!