Thoughts and ideas from Dude With Sjogrens
Dealing with a diagnosis of "Controversy" - The unbelieved or yet to be named diagnosis.
March 20, 2020 at 10:00 AM
by Randy Klein
Doctor with a stethoscope

Every disease starts as an unknown until it is recognised by symptoms, is researched, named, and hopefully both recognised and treated.

Some of these diseases are treated with contempt, or scorn, or not treated at all by the medical community.

Years later (hopefully), these diseases and disorders are better understood, and are treated.

Leading up to these times, a person can go many years without any real treatment. They hopefully will come across a doctor who is willing to try different things until something works.

The medications used for a disease without a name, or a poorly understood disease is typically referred to as an "off-label" medication. This is a medication being used in a different way that it was designed.

There are a lot of people who have lived through many types of horrific pain, or problems that can affect the gut, immune system, or worse, many will live with invisible diseases: They look "Normal."

It's not easy for the person who is dismissed, whether it is because they are not believed, or it is attributed to mental illness.

The latest twist to the stigma of living with a health disease is by having it made political: it's existence denied, and it's presence used to create scapegoats. This has been a more recent phenomena, but it leaves people without hope, allies, and treatment.

People are left to fend for themselves, often feeling isolated, and ashamed that they are unable to get help or even to mention the name of the disorder that they live with.

Disorders commonly accepted today such as Attention Deficit Disorder, Celiac Disease, forms of Autism, Fibromyalgia, autoimmune disorders, food allergies, personality disorders, Irritable Bowel Disorder, STDs, mental illness and the list goes on. It wasn't always this way.

Infectious diseases for many years have been a big part of this. Living with a deadly infection that seems to be someone else's problem until it has spread into our own communities.

What are successful strategies for dealing with a poorly understood, scorned or a disorder that is of developing understanding?

- Recognising that these things take time to be understood and accepted.

- Finding acceptance and hopefully a community of people living with similar issues to communicate with.

- Finding doctors who are working on the cutting edge of medicine, or are sympathetic and willing to help.

- Developing a voice as a person or group and then learning how to advocate for help, resources, and treatments.

- Working to influence people who will hopefully end up becoming allies, and advocates

- Finding people who are well-known who are living with the disorder or have a family member or friend who are passionate about a cause and willing to educate.

- Securing resources to keep this fight alive until there is both recognition and a successful line of treatment.

- Finding a way to educate effectively through different forms of media to allow more people to understand.

The above strategies that time to develop, so short term strategies and goals are critical as well:

- Find ways to keep busy and motivated. Hobbies, research, and things that can involve other people.
- Get up every morning and try to keep a healthy routine: Personal hygiene, eating regular meals where possible

- Find something to focus on. Short term and longer term goals

- Keeping up lines of communication with people.

- Try different treatments until something works

- Finding out from others what they have done to succeed.

- Help others with the same issues to better understand the things that will help us to motivate others to do the same.

- Each person's circumstances can be different. Make this part of the perspective that you develop, and this helps to build teamwork.

- It can be devastating to put all of one's hope into a treatment or cure, only to find out that it too, has not worked. Be cautiously optimistic about things.

- Critical thinking is key. Does something work, and why does it work, will it work again, how can I make it work again?

Having been through several of these circumstances, there had to be a constant fight against having a stigma become part of my identity. It's important to challenge unfair stigmas.

Dealing with a diagnosis that stirs controversy is an injustice, but one that can be overcome. It's important to be surrounded by supportive people (regardless of who they are), and to find a path to advocacy through your efforts or by others on your behalf.

Don't give up.

If you found this article helpful, please feel free to share with family and friends. I am not a medical professional: all information shared is on an "As is" basis.

Be well.