An invisible or silent illness is one that can’t be recognized by looking at the person with the illness. Often, chronic pain or fatigue are part of the symptom profile -- but not always. And often, symptoms aren’t explained by routine blood tests.
In one small study of patients with end-stage kidney disease, participants describe the “invisibility and intangibility of kidney disease.” (1)
Have you felt that invisibility with your health issues?
Do you feel like no one understands what you are going through?
Having a diagnosis of histamine intolerance or mast cell activation syndrome can feel isolating, especially when no one sees your symptoms.
Mast Cells & Invisible Illnesses
Here is a sample of some Invisible Illnesses:
Autoimmune conditions like rheumatoid arthritis, lupus, ankylosing spondylitis, or Hashimoto’s
Chemical sensitivities/intolerances
Chronic fatigue (Myalgic encephalomyelitis)
Depression and/or anxiety
Endometriosis
EDS (Ehlers Danlos Syndrome)
Fibromyalgia
IBS or IBD (Crohn’s, colitis, celiac)
Interstitial cystitis
Migraines
What else have you been diagnosed with that is invisible to others?
Would it surprise you to know…?
… all of the conditions listed above have mast cell involvement. Mast cells release chemical mediators that impact any cells in your body and can contribute to a vast variety of symptoms. While some of your symptoms may be visible, a lot of what the chemical mediators do and impact is invisible.
We will have a full comprehensive list of conditions that have mast cell involvement in the Histamine Haven Online Community, coming Summer 2024.
Various pro-inflammatory cytokines, leukotrienes, prostaglandins, peptides, chemokines, histamine, as well as other chemicals (2) can all originate from mast cells, contributing to what is at the root of your invisible illness.
Perhaps no one in your life understands what these conditions mean, or how they impact your body. It can be confusing for people to understand that one thing can lead to so many varied symptoms. Chances are that no one in your life has even heard of mast cells, so they don’t have a framework to have a meaningful discussion with you.
3 Tips to Stop the Silence
While you can’t make your invisible symptoms visible, your illness doesn’t need to remain silent.
Here are some ideas to help:
Find a doctor who will listen, and who will accept your invisible symptoms as the truth. If your current doctor isn’t listening, ask for a referral and seek out a second or even a third opinion if necessary. Many wellness practitioners are still uneducated in this area of health. It’s a new area of medicine, with new information coming out all the time. Find someone who understands mast cells.
Connect with others. Finding a supportive community can help reduce that feeling of isolation, and provide connection with other individuals struggling with similar issues. You don’t have to go it alone. One place you can connect is to join one of our live classes, and coming Summer 2024, our Histamine Haven Online Community will open its doors. Make sure to sign up for our newsletter here to get all the updates!
Talk to family members and friends. Explain that you have a health condition that impacts a lot of different parts of your body. Some symptoms may be visible, but many are not. You may or may not wish to share what those symptoms are, but explaining that you are exploring your health and learning to manage your symptoms can provide a good starting point for those people in your life who want to support you. If you have limited energy, share Are You a Spoonie? with those you love.
