Those of us dealing with undiagnosed chronic illness can have an especially trying time. It’s all too easy to feel like there’s no way to know what’s wrong, or that we don’t deserve to have the same accommodations as those who have that validation. Nevertheless, there are some ways to cope with undiagnosed chronic illness—and the subsequent undiagnosed chronic illness emotions that come with it.
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The information in this blog post is provided for educational and informational purposes only and should not be construed as medical advice. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you have read online. The author of this post is not a licensed medical professional and does not assume any liability for any actions taken based on the information contained in this post.
When you first recognize that you have an undiagnosed disability, it’s natural to feel a range of emotions. Shock, denial, confusion, and fear are all common reactions. It is hard to come to terms with the fact that you are sick and don’t know what is wrong with you. This is only more of a challenge when doctors don’t seem to know either.
As time goes on, this frustration can continue. The longer you go without answers—and, in many cases, relief—the easier it is to feel hopeless, overwhelmed, or even guilty about your symptoms. Studies show that chronic illness can increase a person’s risk of suicidal thoughts. Is it any wonder that this would be the case for those struggling with the symptoms of a mystery condition?
Obviously, symptoms like pain and fatigue make it hard to forget that we need to prioritize physical self-care. Just as we take our meds and drink more water, though, it’s really important to take care of mental and emotional health too. It can be very challenging to keep our spirits high when we’re constantly feeling exhausted or in pain, but it’s so important to do what we can to stay positive and hopeful…even when that seems like an impossible task.
Planning for a mental health day? Check out our list of films for self-care days!
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Talk to someone you trust.
If you feel stuck, or like you’re not managing things well on your own, it’s best to reach out to someone you trust. This person can help you identify any issues that you may be experiencing, and can also offer support in a way that you can understand. For some people, this might be their support systems, such as friends or family members. For others, it might be a therapist or counselor. What matters is that you trust this person enough to speak openly about what you’re dealing with—and that they will support you along the way.
If you’re looking for professional support, we recommend Talkspace. I’ve had a wonderful experience with my Talkspace therapist!
Write it out.
When you are living with an illness that is not properly understood or has no known cure, it can be difficult to manage your emotions. You may feel frustrated, scared, or overwhelmed. You may feel like you are alone in your struggles. By writing about these feelings, you may be able to process them better and find some relief. Pen some poetry, journal each morning, or channel your emotions into fiction. Whether you keep these musings to yourself, burn the pages you’ve written, or eventually edit them into something publishable is up to you.
Balance time alone with social connection.
For some people, isolation is a worrisome part of their coping strategy. For others, spending as much time as possible with others is one way to distract themselves from their symptoms. Whatever the case, try to give yourself the best of both worlds. If it’s been a while since you’ve talked to a loved one, schedule coffee with a friend or call home. If you’ve been going non-stop, give yourself the gift of some alone time to decompress, recover in a physical sense, and confront any emotions that may have popped up.
Connect with others who understand.
The online chronic illness community is astounding in its sheer size and sense of support. I’ve made a few connections with fellow spoonies who I truly consider to be friends! If you have or suspect you have a particular condition, you’ll find there are almost always Facebook groups, Twitter threads, and TikTok trends associated with it. The same is true for many symptoms. Of course, you may find similar support through in-person groups and communities—however, in my experience, these virtual spaces make finding those who “get it” more accessible and realistic for the ever-changing nature of life with chronic illness.
Try meditation or mindfulness practices.
Some of the negative feelings that you may be experiencing can be overwhelming. While they can’t fix things, practices like mindfulness and meditation can help you feel a little bit better as you develop new ways to cope. I’ve had good experiences with apps like Insight Timer and Ten Percent Happier, as well as guided meditations and ambient sounds on YouTube. You might also want to try breathwork or even EFT tapping to clear your mind and channel your focus.
Learn what you can.
If you suspect you’re dealing with a particular condition or type of disorder, consider taking some time to read some reputable sources discussing it. While it’s crucial to avoid diagnosing yourself or falling into the trap of “Dr. Google,” this information can help you feel a little more in control of your health, even as you wait for answers.
Try to tune out any naysayers.
Even with a diagnosis, those of us with chronic illnesses are all too aware of the people who don’t believe in our conditions or seem to think that we’re simply not trying hard enough to feel better. Obviously, this isn’t the case. While it can be frustrating to hear someone trivialize your struggles or offer unhelpful advice, know that this often comes down to ignorance. For every person who swears you’ll be cured by yoga or each doctor who ignores your symptoms, there’s someone else who’ll believe and support you.
Let yourself feel these feelings.
It’s important to remember that these feelings are normal and healthy and that you shouldn’t try to fight them. Rather, you can try to understand what they are, and how they’re connected to your internal dialogue.
Perhaps most importantly, remember that there’s no one right or wrong way to cope with the emotional side of an undiagnosed chronic illness (or a diagnosis, for that matter). You might have to try a few strategies to find what works best for you, or even test out a new coping mechanism as time goes on. What matters most is that you find something that helps you deal with the emotional struggle of having an undiagnosed chronic illness.
Are you unraveling mysterious symptoms of your own? How do you handle these undiagnosed chronic illness emotions? Let us know in the comments or @anideallifeblog.