Kathleen has been a friend of mine for a long time and I’m grateful for her volunteering to be the first person to be interviewed as part of the Disability Interview series here at Just Geeking By. Opening up about ones chronic illnesses can be a scary thing, and the aim of this interview series isn’t to face one’s fears but to help others who are facing the same ordeals. To say to those who have the same conditions, or have just been diagnosed that there are people who understand.
Hi Kathleen, please tell us a bit about yourself!
My name is Kathleen. I’m a single parent to a 12yo boy and furmom to nine cats. I like anime, reading, creative writing, and computer gaming. I know just enough Japanese to yell at the subtitles when they get it wrong. I’m on the staff of a roleplay writing site. I work from home as an independent call center agent.
Would you please tell us a bit about your condition/s?
I have scoliosis which has created other problems over time, including myofascial pain syndrome, fibromyalgia, arthritis, degenerative disk disease, endometriosis, and depression.
Scoliosis is a curvature of the spine. Mine curves in two ways, vertically–there’s a slight C shape to my spine, and horizontally–the arch in my back arches in too much.
Myofascial pain syndrome a condition where certain muscles are in constant contraction, in my case, the ones surrounding my crooked spine. It feels like a charlie horse from the middle of my back to the middle of my butt all the time.
Fibromyalgia is where the nervous system is overstimulated and sends pain signals that aren’t indicative of a real problem. It creates an overall achy feeling like when you have a fever.
Arthritis stems from the same process that mends broken bones. It happens in joints where the cushioning between bones has deteriorated and the bones rub together. That rubbing triggers the bond mending effect which can create bone spurs–little thorns of bone that poke soft tissue and irritate it, and/or can fuse the bones together, limiting range of movement. I have arthritis in every major joint, including my lower spine.
Degenerative disk disease is when the spongy pads between vertebrae deteriorate so that the vertebrae rub together, which causes pain.
Endometriosis is an inflammation of the lining of the uterus. It causes back pain and extreme cramping during menstruation as well as very heavy bleeding and clotting.
When did you first become aware of your symptoms and how long did it take to get a formal diagnosis?
I first started having back pain in my mid-teens. It gradually got worse over time and is now debilitating. The fibromyalgia and myofascial pain syndrome were both diagnosed in 2010. I take Gabapentin for the fibromyalgia and muscle relaxers for the myofascial pain syndrome. There is no cure for either, just relief of symptoms. My Depression was also diagnosed in 2010 and I initially took Paxil but now we’re trying Cymbalta. The arthritis was diagnosed at several different points between 2010 and now. I’ve finally gotten my doctor to give me a referral to a rheumatologist. I was diagnosed with endometriosis in 2017 and am scheduled for an appointment next month that will determine how they treat it.
What changes did you need to make to your life?
The changes gradually increased as the conditions piled up and grew more debilitating. At first, I pushed through most of it. I learned how to lift things properly, though my back can go out from picking up a piece of paper. Now, my son helps a lot. He gets things off bottom shelves, picks up things, I drop, etc. I’ve become extremely sedentary and solitary. I don’t like to be around people and show how much pain I’m in. Depression plays a part in that as well. I’m fortunate to have a job I can do from home but sitting at a desk for even a couple hours is painful. I have to change positions often, use menthol rubs, TENS units, heating pads, and tons of medication.
How does this impact your daily routine?
I’m not able to perform up to par like a “normal” person. On bad days, the dishes pile up. Chores don’t get done. It’s everything I can do to work and keep my son fed. I use the Walmart grocery pick up service because I can’t walk through a large grocery store. I very rarely leave the house.
What is the hardest part about being chronically ill?
The hardest part for me is that none of my conditions are visible. I don’t “look” disabled or sick but I am. I can’t function but I can’t show anyone why and few people really understand the impact my conditions have on my pain level and my state of mind, much less my body.
What language/terminology do you use to identify yourself?
I say that I’m disabled.
What do you always get asked about your chronically ill?
Well, because it’s an invisible disability, I don’t get asked about it except by doctors.
What do you wish people would ask?
“How can I help?”
“Do you want some pain medication?
What is the most positive experience you have had related to being chronically ill?
I honestly can’t think of one. I guess that shows my mental state and/or the state of this condition. If I had to choose something, I’d say that I’m hoping this makes my son more helpful and sympathetic to everyone, not just me.
What was the worst experience related to your chronically ill?
My son’s father leaving me at 40 with a kid. He left specifically because I gained weight and he got tired of helping me. I did a lot. I took care of 3 kids (2 of his and 1 of ours) all under 5 years old. I just needed him to do small things. I would ask him to carry the laundry downstairs, then I’d do the laundry, fold it, put it in the basket, and ask him to carry it upstairs, then I’d put it away. He offered to help a lot, so I let him do it, but apparently, that was the wrong choice.
What advice would you give to someone who is seeking answers, or is newly diagnosed?
You know your body. Relentlessly pursue treatment. Find a support structure. Don’t feel like you’re alone or that something’s wrong with you. Sometimes we just get “lemon” bodies.
What is the best advice you were ever given?
To keep pursuing treatment no matter what.
If you could teach anyone anything about what it is like to be you, or chronically ill what would it be?
Hrm … put a knife in your back, leave it there for 24 hours, do all your normal stuff, and let me know how you feel. I don’t wish pain on anyone but I do wish they understood what it’s like to be in constant pain yet expected to perform as normal. I’d like them to know what it feels like to be dismissed because the pain isn’t visible. Or have people think I’m weak for being in pain.
Now for some random questions…
If you were the god/goddess of anything, what would it be?
The god of currency, and make sure everyone had some.
What would your animal form be?
Do you have any fun quirks?
When I meet someone new for the first time, I talk with a weird accent that’s a cross between British and Russian. I don’t try to; it just happens. And then I get used to them and revert to my normal voice and they’re like, “Wait. What?”
Do you collect anything?
Dragon statues / paraphernalia.
Over to You
I hope that you found Kathleen’s interview as interesting and as an enlightening as I did, learning about some new conditions that may have offered a new perspective on the world. Like Kathleen, I also suffer from chronic conditions which are invisible to the naked eye and as Kathleen discusses here unless you’re specifically told about them you don’t know what someone is going through.
If you have any thoughts or comments let us know in the comments section.
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