Are you or your loved one suffering from an invisible chronic illness and searching for answers? 

 Don't worry, you are not alone!

It is not uncommon to feel overwhelmed and isolated after, and even before, a diagnosis of an invisible chronic illness. Often faced with statements like, "You look healthy,"  "I think you are just being dramatic," or "Is that even real?" can often leave a person feeling misunderstood and defeated before even getting started on the journey for help.

View of a woman holding her head with a view of her back

Believe me, I understand and I want to help you. 

There are so many questions when starting out and I want to help you navigate through your illness by...

  • Offering one place to find medical information
  • Showing you where to find support groups and assistance
  • Giving you a non judgmental approach to the many different tips and tricks that aid in pain relief and sometimes, remission.

But first...

What is invisible chronic illness? 

This term is used to describe a multitude of illnesses that are not obviously visible to others. However, as you already know, just because people can't see it, doesn't make the pain non existent. Understanding that there are a wide range of invisible illnesses can be helpful and comforting to know you are not alone on this journey.

Here are just a few examples of invisible chronic illness:

  • Migraines
  • POTS (postural orhtostatic tachycardia syndrome - a type of dysautonomia)
  • Ehler's Danos Syndrome (EDS)
  • Eosonophilic Esophagitis (EOE)
  • Autoimmune Diseases (such as Ankylosing Spondylitis, Rheumatoid Arthritis, Lupus, Inflammatory Bowel Disease, etc)
  • Vascular Compressions (such as Thoracic Outlet Syndrome, May-Thurner Syndrome, Nutcracker Syndrome, etc)
  • Diabetes
  • Fibromyalgia
  • Cancer
  • Endometriosis
  • Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)
  • Food Allergies
  • Anxiety Disorders

and many, many more...

Now that you know what invisible chronic illness is, where do you go from here?

Stethoscope with cell phone

If you or your loved feel that an invisible chronic illness may be the source of your pain/discomfort, your first step is to see your Primary Care Physician (PCP). To be prepared for your appointment you want to do the following:

  • Be sure you know your medical family history (parents, grandparents, siblings)
  • Make a list of all your medications, including any supplements or herbs.
  • Make a list of your symptoms (also include how long you have had them, when they occur, how often, and how severe)
  • Make a list of questions or concerns to ask your PCP

I have learned the hard way if I don't have any of the above written down, I forget crucial details, medications, or questions. The more information you can share with your PCP, the more accurately the PCP can assess and decide on the next steps.

This first appointment is important, but it won't be your only appointment. Try to be patient because diagnosis often takes some time. Here are some things to expect when you have your first PCP visit:

  • Medical History: Your PCP will want your medical history, will ask questions about your symptoms (this is where your list will come in handy), and will want to know about family history.
  • Physical Examination: This is to assess your current health and potential signs of chronic illness.
  • Diagnostic Tests: These will be dependent upon your symptoms, but your PCP may order blood tests or imaging to help with diagnosis or treatment.
  • Discussion: Your PCP will go over your symptoms in detail, may cover potential diagnoses, and possible treatments. This is the time to pull out your list of questions and concerns! Don't be afraid to ask or voice them. 
  • Treatment Plan: Don't be discouraged if this does not come up on your first visit. It is more likely that this will occur after diagnostic tests are completed. However, if a diagnosis is made at this visit, your PCP will go over potential medications, lifestyle changes, or will give you a referral to a specialist.
  • Follow-up: You will want to make a follow-up if you have diagnostic testing, to monitor your progress, or adjust the treatment plan if one was given. 
  • Referrals: Depending upon your symptoms your PCP may automatically refer you to a specialist, but generally, the PCP will wait for diagnostic testing to come back. However, you can request to see a specialist if you desire. Also, in the U.S., depending upon your insurance plan, you may be able to make an appointment to see a specialist without a referral.

Diagnosing an invisible chronic illness can be tricky. Often, doctors can be dismissive and gaslighting in the medical community is an issue. So, I'd like to take this moment to briefly address advocating for yourself or your loved one.

I have been fortunate enough to have several good doctors. These doctors listen without judgement, aren't afraid to admit they are stumped, and they don't hesitate to send me to a specialist (or a different specialist) if they can't figure out my issue. However, I have also had doctors who hear what they want, assume they know the answers without fully listening to my problem, or just completely dismiss me. 

I have learned through the years that advocating for myself and my loved ones is not always an easy task or met with open arms. You have to have a thick skin, determination, and a strong backbone to fight for help. Learn to trust your own gut and don't shy away from asking hard questions or finding a new doctor who will listen. 

You and/or your loved one is worth advocating for every single time. I hope you can find the help and support you need here. Remember, you are not alone.