I’ve always had pain.

Ever since I was young I would complain to my parents about my knees, wrists, and back hurting me. They would attribute this to growing pains, reminding me that I would eventually grow out of this phase of my life, and the pain would pass. When I was around ten years old, I had my first appointment with a rheumatologist who made me stretch into a bunch of uncomfortable positions as she rubbed around my joints. After this examination, the doctor concluded that I was fine and I continued on with this mysterious pain.

After my first year of university, I was referred to a new rheumatologist. This time, instead of doing a quick physical examination of my body, I was sent for blood work and an X-ray. From these tests, she found that my blood had high levels of inflammation and that my SI joints had begun to erode. At this point, the doctor had diagnosed me with ankylosing spondylitis (AS) which is an auto-immune disorder that causes inflammation and pain throughout the vertebrae’s in the spine.

Today, there is no cure for AS. I currently take a medication that helps reduce the pain and swelling I feel in my body, but if this disorder goes untreated or if the disease is very serious, the pain can range from mild discomfort to full spinal fusion.

I currently experience pain throughout my spine and neck, and become debilitated when doing simple tasks such as sitting, standing for more than thirty minutes, or trying to get into a comfortable position to go to sleep.

Often when I talk to friends and loved ones about my feelings, I get upset. I feel like no one understands my pain and how severe it can be.  While on the outside I may look fine, the inside my body is not operating with the same composure. In short, invisible illnesses are not always easy to spot.

Sometimes when people try to support others they end up sharing their own personal stories in attempts to sympathize. Other times, they may brush information off as unimportant. The issue is that this causes them to forget that the discussion isn’t really about them, and that flipping the narrative can be particularly damaging to the individual and their story.

If you know anyone who has an invisible (or a visible) condition, here are some pointers on how you can aid them without minimizing their feelings.

  • Even though you may not be able to see someone’s illness, it does not mean that it is not there. If you want to be supportive to your new-friend, coworker, or loved one, do your best to educate yourself on what their condition means to them and understand how they are affected by it.
  • Try to not to question the severity of a person’s illness. Believe and support people when they tell you that they are in pain.
  • Exercising and promoting other forms of treatment are not always beneficial to an individual. You may be giving these suggestions as a way to help someone, but many indivisible illnesses are untreatable and exercising is not the solution to all health problems.

My biggest advice to anyone trying to understand someone with an illness, invisible or not, is to listen and offer support. In a world that isn’t always accommodating to those living with disabilities, this can mean a lot.

Header Image Credit: Nina Cosford

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