As reported in Multiple Sclerosis News Today, Jessie Ace tells the story of receiving her diagnosis with multiple sclerosis at 22. She wrote, “I hate needles.” She ranks being told of the injections as the second worst news she had ever received, with her diagnosis being the first. She had just successfully finished her degree and was set to be an illustrator when she lost the use of both hands. The tools of her craft- pencils, brushes, fine movements- were suddenly out of the picture. Her vision of the future was rapidly altered, as her profession became inaccessible. She said, “It was a difficult time. I became super depressed, but Paul, then my boyfriend, was there for me from day one.”
She took the time to speak to her now-husband on her podcast, “The DISabled to ENabled podcast” about how he felt receiving her diagnosis, and what they learned together about communicating and tending to her illness.
Multiple sclerosis is a rare neurological disorder that damages the communication between the brain and the body. The immune system mistakenly attacks the nerves cells’ protective coat, the myelin sheath, potentially targeting any body part. Each patient’s experience looks different with distinct onsets, but common symptoms include muscle weakness, speech difficulty, lack of bladder control, and inflammation. The disease can be broken into two major types, relapsing/remitting which comes in episodes of intensive symptoms followed by times of remission; and progressive, which has unrelenting symptoms. There is currently no cure, but there are some treatment options.
For Jessie, living in England means she benefits from the universalized free healthcare, but that also gives the state decision making power about what treatment she receives. For her, it meant injections, which with a fear of needles, she dreaded. She recounts her gratitude for Paul, as he stood by her through the majority of her treatments, which could induce panic attacks. She notes that it would have been very difficult to endure those injections without him.
Her Relationship and Her Disease
When she learned of her diagnosis, she was afraid of the burden that would would be put on her partner, who she’d been inseparable since meeting at 16. She even told him to move on to someone else, to which she explained, “He told me to stop being silly and get in the car so that we could go home.” Jessie talks about how thankful she was for Paul and his insistence on standing by her side through thick and thin.
She explained had she not already been married, she imagines how difficult it would be to date while suffering from episodes of symptoms. How would she explain the disease, what if she couldn’t walk when the date was scheduled?
On the podcast her husband Paul explains what he’s learned from having a partner with a rare disease. He said, “Don’t look stuff up online.” He continued, “Something we’ve certainty learned is conformity bias, whatever you look for online you will find.” He describes how for him, it didn’t hit him as much upon hearing the diagnosis, instead he felt he just had to deal with everything as it comes.
She said, “His main way of helping me through issues was to continually remind me that we can’t worry about things we have no control of, and we deal with them as they happen.” She acknowledges that this can be difficult, as there are times when she feels helpless and wants to cry. Jessie states her belief that rare disease patients, and anyone who has received a diagnosis, has the right to react to it in their own way. If they want to be sad or feel down, they can. She did note that Paul’s advice helped her.
Because multiple sclerosis symptoms are invisible, Jessie learned how to be more expressive and vocal about what was paining her. She said that instead they created their own language to communicate their needs. They used code words and clues to avoid tension.
He explains in the podcast he thinks as a partner of someone receiving a diagnosis, your job is to be supportive of the person diagnosed. He says things will come at you in life and you just have to deal with it, but for them, if anything their relationship is stronger.