14 Ways COVID-19 Has Affected Undiagnosed People

When you are searching for a diagnosis for a health condition, the process can take months or years. While many people face roadblocks when it comes to getting diagnosed, people are facing a new challenge now in their search as health professional prioritize treating COVID-19 patients.

From canceled doctor’s appointments, long waits for referrals and delayed testing, many people who are undiagnosed are left in limbo.

If you are searching or have searched for a diagnosis for a health condition, you know that this process can take a mental and physical toll. Contributor Katherine D. talked about the lasting mental toll of being undiagnosed in a post on The Mighty, writing:

It starts with doctors’ appointments, tests, anxiously waiting for results and utter confusion when the tests don’t show anything. You start to question whether anything really is wrong, not because you’re not sick, but because the medical community cannot understand or provide you with answers. You question every aspect of your body. Monitor it for changes and wait anxiously for another test, appointment, medication, or just pure chance that the nature of your illness will change.

A banner promoting The Mighty's new Undiagnosed group on The Mighty mobile app. The banner reads, Not diagnosed, but still experiencing very real symptoms? In the Undiagnosed group, we support and encourage each other while we search for answers. Click to join.

If COVID-19 is complicating your journey to finally get a diagnosis, you’re not alone.The coronavirus outbreak has impacted many people’s lives in ways they did not expect, and the undiagnosed community has certainly been affected as well.

We asked The Mighty’s chronic illness, mental health and disability communities to share how the coronavirus has impacted their diagnosis journey.

Here is what they had to share:

  1. “All of my doctor’s appointments have been canceled as they didn’t want me in contact with anyone that might have the coronavirus. My MRIs were canceled and my insurance won’t support certain places now for me to get the test done.” – Amanda S.
  2. “I moved states right before we were affected by COVID-19, so trying to get reestablished is hard enough with my records transfers, and I’m in limbo waiting for specialist referrals until then.” – Katie J.
  3. “They tested me a few weeks ago over Skype, when I was still enjoying quarantine, and rated me in the normal range for depression during my psychological evaluation. This is because the last two months of not having to do school runs and deal with anyone except my children has been a significant weight off my shoulders, I got to do lots of fun activities with the kids, and life is currently easier than it was before this hit.” – Kristen Y.
  4. “Half the specialists I need are not considered essential. They have been trying their best to see what they can see with bloodwork and canceling out other causes. I hate not knowing.” – Ashley P.
  5. “Waiting to get a muscle biopsy to further confirm if I have mitochondrial disease. Sitting here and nothing I can do about it. It’s awful waiting.” – Chelsey R.
  6. “Traveling to go to other doctors during a pandemic is a whole new ball game. I traveled to Mayo last week and went through several hot zones for a condition that we have been trying to figure out for five years.” – Sarah M.
  7. “I am also a college student so this summer I was supposed to see different specialists and potentially go through more testing. I haven’t seen my doctors in person and I’ve pushed back specialist appointments until I can see one in person.” – Erica S.
  8. “I had to push all of my doctor’s appointments at Mayo clinic back two months because of it. Now I finally find out that I have fibromyalgia and have to be extra careful going to the doctor to get help for it.” – Liz T.
  9. “My colonoscopy was canceled. Skin biopsies canceled. My doctor discharged me as their patient without a reason. Another clinic I was being seen at shut down completely and I got an apology form letter.” – River L.
  10. “In my city, all ‘routine’ testing other than bloodwork is on hold until mid-July. Some specialist’s offices (like pediatric endocrinology) are completely closed. If you don’t have COVID-19, you don’t matter.” – Angela
  11. “I’ve been waiting on a referral to a psychiatrist for over a year. It’ll likely now be another six months before I even get a call. No one will prescribe me anything in the meantime because I have multiple disorders that aren’t all established. I understand it but it’s frustrating.” – Tina V.
  12. “My last video appointment where I was supposed to get results from testing, I only understood every third word. I’m pretty sure he said my results came back entirely normal. But you know, for all I know, it’s possible I got a diagnosis and I just couldn’t hear it. It was that bad.” – Cassandra C.
  13. “I can’t get an appointment with a psychologist to get the evaluation I need to be done. I’m relying on talk therapy and medicine from a diagnosis my therapist and I feel is incorrect. My family moved states so we are waiting for new insurance, but even then, wait times for appointments can be months long.” – Sarah M.
  14. “COVID-19 may actually help me in my journey to finding the answers and possibly a diagnosis. I’ve tried four times to get into Mayo Clinic and was denied the first three times because the demand was too high. They just didn’t have an opening. On the fourth try, during this pandemic, they offered me an appointment.” – Marsha M.

If you are undiagnosed, share in the comments below how people can support you on your journey to get a diagnosis. 

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