Why many chronic diseases are so hard to be diagnosed by doctors.
What you can do to keep fighting for answers and receive help.
Laura Herrera
Jul 13, 2020· 5 min read
Photo by Bill Oxford on Unsplash
Let me start by saying- what you are going through matters. If you are seeking answers or have been diagnosed and have been finding it hard to navigate through your journey-please continue to not give up on hope in seeking the best treatment for yourself.
“Chronic diseases are defined broadly as conditions that last 1 year or more and require ongoing medical attention or limit activities of daily living or both. Six in ten adults in the U.S. have a chronic disease and four in ten adults have two or more.” - CDC.gov
For some chronic diseases, doctors can diagnose fairly easily with tests. For others, it can take years. Many times the person has spent years feeling hopeless with no-one understanding what their body is going through including doctors, family, friends, and loved ones. Patients can feel like they are going crazy trying to get the help they know they deserve all the while questioning their sanity of what they are going through because no one knows what it is.
Often, chronic diseases are not a one size fits all. People can have various symptoms and some may not be well known to doctors.
Let me be Frank- you know your body, you know when something is off, and you know when you haven’t felt well for a long time. Everyone deserves to get the help they need.
Sometimes you first have to be your doctor and ask yourself questions?
When do my symptoms come on
What are my symptoms
How long do my symptoms last
What has helped when I’m having symptoms
What has not helped when I’m having symptoms
The more questions you ask yourself the more you can relay to doctors when you see them. Even if you have already been diagnosed, ask yourself questions to help doctors while seeking the best treatment.
I went through a debilitating disease called Endometriosis for 11 years. It took me 7 years to get diagnosed. It then took me 4 more years to get the help I needed. It was at the end that I found out I was also suffering from the sister disease called Adenomyosis. Both now have been successfully treated by a specialist with 2 very skilled surgeries.
Long story short:
7 years to be diagnosed
Total of about 17 ER visits over the years
Countless doctors — at least 10
Multiple failed treatments and therapies to try to help with the debilitating pain
4 surgeries within the last 4 years -done by 3 different doctors and done in different states
Thousands and thousands of dollars
Throughout this time, many times I felt hopeless. My relationships suffered. I found it hard to convey what I was going through with others including my family and loved ones. At times I thought I was going crazy and that it was all in my head. I felt alone.
Now having spoken to others going through the same disease(s), we have been in the same boat, but just different waters. I’ve also spoken to people who’ve gone through other chronic diseases that have taken years to be diagnosed and I’ve noticed many similar issues for all of us. Even though we may not all have had the same symptoms-many of us have had similar experiences such as having:
A heavy mental toll
Besides the physical symptoms, the disease affecting our relationships with others and also within ourselves.
-Most of our loved ones, family, and friends not understanding what we are going through.
-Feeling alone and that no one understands.
-Tired of trying to find new ways of explaining what we are going through.
-Staying silent through a lot of the physical pain or symptoms because we didn’t want others to think we are making it up -because who could be in pain that much of the time. Tired of hearing people say things like, “You’ll be ok, or it can’t be that bad, or did you take pain pills yet.”
-Being upset, hurt, and tired when a doctor doesn’t know what to do to help including going through failed treatments with them.
-Finding it hard to make plans because of not knowing when we may have flare-ups. Also having had flare-ups during events and having to leave or it ruin our time with others.
A large financial toll
-Most of us having multiple doctor bills, hospital bills, prescription bills, etc.
-Most of us missing time from work or school. Some of us fearing for our jobs. Some have even lost jobs.
If you are finding yourself going through many symptoms and haven’t found a doctor that knows what is going on with you-
Keep with you a journal of all the questions I wrote earlier and plan to get a second opinion, a third, and on and on until someone figures out what is going on in your body. Always get a copy of your medical records that you can take to another doctor if necessary. All the information and tests from other doctors can help tremendously. At times you may find things in your records that you want further clarification on.
If you are going through a chronic disease that you already have been diagnosed with-
Please do not let your hope to fade, please keep fighting for the best treatment for your individual case. As above, also keep a journal with questions and get copies of your medical records as well. This helped me in advocating for myself along the way and getting the best treatment for my individual case.
Things you can do, that I wish I would have done during the duration of the disease(s):
Join a support group either online or in your community.- Meet other people that are going through similar things. (This is vital)
Try out things that may be working for them. (With your doctor’s consent) Have the attitude that if it doesn’t work for you, that you will continue to try something else and keep hope alive.
Get recommendations from others on doctors that have truly helped them and that have a history of successfully treating others with your condition.
I will be doing more articles on specific ways you can help bridge the gap between yourself, your family, loved ones and medical professionals as time goes on.
I know what it’s like to go through all the turmoil- to feel like you are just trying to keep your head above water. I also know what it’s like to fight and fight for someone to hear you so you can get the help you need. It took me many years to be helped and now I would like to spread hope and share some tools I learned along the way.
Be encouraged, what you are going through matters.
What are some of the topics you like for me to share relating to chronic diseases?