Mom shares what it’s like to parent with a chronic disease: ‘I don’t want that to be my identity’
When Lindsey Santiago first starting having tingling in her legs and feet, she chalked it up to back pain and sciatica. It got worse when she walked longer distances, but she still wasn’t overly concerned.
“I was a fit 23-year-old at the time — I really didn’t think anything of it,” she tells Yahoo Lifestyle. So, Santiago had some acupuncture and the tingling eventually went away. But a few months later, she noticed that she couldn’t see as well as she normally could. “I had pain and blurry vision,” she says. “I though it was just my contacts, so I started wearing my glasses.”
She eventually saw an eye doctor who ran a few tests. “He said, ‘I don’t think it’s anything. If I did an MRI, it might say you have multiple sclerosis, but I don’t think that’s the case,’” she remembers. “He didn’t seem very concerned and I didn’t know what MS was at the time. I just trusted the doctor.”
The vision issues “eventually cleared up,” she says. But the following Christmas, they came back again. She saw a different eye doctor, who recommended that she see a neurologist. That neurologist “ran a boatload of tests,” including an MRI, she says, and told Santiago she was fine. But her primary care physician wasn’t satisfied and recommended that she get a second opinion. So, she saw another neurologist, who ordered yet another MRI.
“He pulled up the MRI, looked at it for what felt like two seconds and said, ‘Oh, so you have MS,’” she recalls. “It was clear as day to him on the MRI.”
It turned out that her vision issues were due to optic neuritis, a common complication of MS. While MS is a chronic and often disabling disease, Santiago says she didn’t have much of a reaction to her diagnosis, not really understanding what it all meant. Her mom, who was with her at the appointment, asked if she was okay. “I said, ‘Yeah! Everything is fine!’” she recalls. “I didn’t know the full breadth of MS then.”
Santiago was 25 at the time. “I had a longterm boyfriend, now my husband, we were living together, and everything was going as planned in some ways,” she says. “Just from the calm way the neurologist spoke to me, it didn’t seem like this would be a huge change in my life. But nine years down the road, things have definitely changed.”
Santiago was put on a weekly intramuscular injection treatment that caused flu-like symptoms but she says she otherwise was fine…for a while. Then, her vision issues started up again and her treatment plan was changed.
She’s since developed other symptoms. She has incontinence and bladder issues at times, as well as spasticity — a common symptom of MS — in her feet and legs, which require her to use assistance to walk. She used to have to rely on a walker, but now uses a cane or crutches after having a pump installed in her body that dispenses anti-spasticity medication directly to her spine.
Her spasticity has impacted her ability to carry her toddler son, too. “When he was younger, I was able to carry him more, but I have a lot of balance issues,” she says. “When you’re holding a child, you don’t want to fall.”
Santiago says she can hold her son and take a few steps, but that’s it. “I can’t take him from room to room,” she says. “That’s a challenge at certain times, like when I tell him to go into timeout and he doesn’t do it. I can’t move him in a lot of ways.”
Santiago now does a lot of training and therapy, working with a personal trainer, doing pilates, and undergoing music therapy for gait training. Still, she has to be careful about the surfaces she navigates. “I don’t walk long distances, and icy, slippery, or uneven surfaces are challenging,” she says.
Santiago works for the Accelerated Cure Project, a non-profit that works to accelerate advances in MS research, and says she thinks about MS “constantly.” She used to try to conceal her diagnosis at work and from certain friends but now “there’s no way to hide it since I use crutches and have mobility issues,” she says.
Santiago says she’s “still not the average 34-year-old” and there are certain things she wishes she could do. “I miss being able to get out and just walk to the store or just walk down the street and get a cup of coffee,” she says. “You see people walking all the time and you take it for granted that you can get up and go, or put your child in a stroller and walk. That to me is huge.” She also used to play tennis, but says she recently was able to do an adaptive tennis program. “That was something I really missed, but I was able to get it back,” she says.
She adds: “I get angry and frustrated sometimes, but then I feel like nobody needs to hear me complain. I try to just carry on. I do need extra help, but I don’t want that to be my identity. It’s tricky.”
Santiago stresses that each case of MS is different. “I don’t want someone newly-diagnosed to think that my path is the one they’re going to be on,” she says. Still, she recommends that people speak up when something doesn’t feel right with their health, and she’s thankful that she was diagnosed at a young age. “I knew I was getting worse for a while, even though I was told I was fine,” she says. “I should have questioned things more. Be an advocate for your health and push for answers.”
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