If you’ve ever experienced baffling and debilitating symptoms, had a long line of tests and many false starts to get a chronic illness diagnosis while being called “dramatic” and finding friends drift off during the process, HGTV host and “Property Brothers” guest star J.D. Scott can relate.
“You may have noticed over the last, just over a year, that I do a lot of content from the office and from home. So the reason why that is, I’ve actually been quite sick for the last, maybe about 13, 14 months,” Scott shared in the video. “In May  I ended up in the hospital because things got really bad. … That began the whole process because that event there was so bad I thought I was dying.”
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Well, I’ve been kind of dreading this video for a long time but knew it had to be dealt with eventually. There have been some important things going on in my life this year that I wanted to finally explain to all my wonderful followers. All I can say is thank god for Annalee Belle, my family and a couple solid friends who were there for me every step of the way. Get some popcorn because this is a long video and it will take you on an emotional journey with us. See you on the other side. ❤️By the way, for anyone that wants to look at the type of medicine Dr. Scott Jacobson practices, his page can be found here: Wishing Wellness MedicalHe’s given me back my life.
Posted by JD Scott on Monday, July 8, 2019
While it wasn’t his only symptom, Scott said one of the most debilitating was his hypersensitivity to heat. He couldn’t tolerate anything warmer than 69 or 70 degrees Fahrenheit and he wore an ice vest most of the time because even spending short amounts of time in the heat caused a flare-up of his symptoms.
“I would suddenly feel like my skin is on fire,” Scott said. “I would start passing out and I’d be out of commission for sometimes days. I just could not wake up. I’d be passed out in bed for days.”
Scott visited many doctors and specialists to try and find answers for his undiagnosed condition. Experts eventually narrowed things down to his brain and he went for several consults with neurologists, a neurosurgeon and a radiologist. These doctors suggested Scott may have an autoimmune condition like lupus or multiple sclerosis (MS), or possibly two brain aneurysms.
Another referral to a specialist neurologist eventually ruled out brain aneurysms, which Scott said was good news, but also frustrating because he still didn’t have an answer. “We’re kind of back to square one,” he said after six months of appointments and tests.
Belle added part of the frustration was the long wait times in between appointments. “The MRIs were quick, but every appointment with a specialist took at least a month, if not several, to get in,” Belle said.
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The wait time to see the neurologist who specializes in headaches was four months. This doctor was very thorough, Scott said, and collected records from the other doctors he had already seen. Based on Scott’s feeling of extreme pressure in his head, like it would “burst,” along with a “crawly feeling,” this neurologist eventually treated him with medication for a rare condition called nummular headache.
Scott said the treatment helped a bit, however, it didn’t help Scott’s hypersensitivity to heat, which limited how much he could do and ruled out activities like traveling almost completely. He did find ways to adapt and work for 15 to 20 minutes at a time before needing to rest.
“I was extremely restricted in where I could go. I couldn’t really venture far from home or the office because I had to be within an extremely controlled temperature, environment,” Scott said. “Walking too much would bring on the symptoms. Heat would bring on the symptoms. So I was very limited in what I could do but as long as I was within an area I could control, I could actually do things.”
Belle, who works as a makeup artist for HGTV, eventually connected with a homeowner and functional doctor featured on a show. Functional doctors, who often hold a medical degree, typically combine Western medicine practices with holistic or alternative approaches. Scott got in to see this doctor and went through more rounds of tests, which required 25 vials of blood.
Testing revealed Scott had a severe gastrointestinal tract (GI) infection the doctor believed was related to his other symptoms. Scott said his antibody levels — an immune system-related protein that fights off infection — were very high and mimicked an autoimmune condition. The functional doctor believed the immune system couldn’t fight off the GI tract infection and was now going haywire.
Scott was put on antibiotics and he started to feel better. Every week he gets a little better and can do more. He hasn’t needed his ice vest in about a month.
“I’ve felt at times recently like I did before this all started over a year ago,” Scott said in the video. “To me that’s huge progress. I haven’t felt like that in ages. I’ve been able to do things. I’ve been able to go outside sometimes. It’s not all better by any stretch. I don’t want you to think, ‘He’s cured!’ But this sort of thing does take time.”
Belle and Scott also revealed there were many people in their life who “faded away” during Scott’s medical journey. Belle said at times she struggled with loneliness, anxiety and depression, especially after loved ones made harsh comments. Some friends, Belle said, thought Scott was just being “dramatic.” Others didn’t understand and thought it was like treating a cold.
This experience of isolation is common for many living with chronic illness or an undiagnosed condition. Mighty contributor Mary Mattio wrote about this in her article, “When Your Condition Continues to Be Undiagnosed,” saying:
When you have a diagnosis, those who love you can advocate on your behalf. They can donate to fundraisers and participate in walks, they can pray there’s a cure for the condition torturing you. But when there is no name, people doubt you. It doesn’t matter how sick you are, if you can’t identify why you are unable to move, or sleep, or eat, or leave your bed… people wonder about your sanity. They wonder about your personal will and your strength.
Scott ended the video saying he’s grateful to see a reduction in his symptoms. He also offered some advice for loved ones of others going through a similar journey, a reminder you don’t need to have all the answers to support a chronically ill friend.
“They don’t need anything from you. They just need good conversation,” Scott said. “I’ve heard people say that, ‘Oh, they just don’t know how to deal with something like that.’ The thing is though, you don’t have to deal with it. It’s not you going through it. You don’t even have to talk about it. You just have to be there for the person you care about.”