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What it means to be living with chronic illness
Three people share their health journeys after being diagnosed with a chronic health problem. The inspiring truth they share? Healthy looks different for everyone.
Learning you have a health problem that may last the rest of your life can be pretty tough. You may have to make some changes to your habits. You may have to start taking a medication and visit a doctor more. And you might not be feeling great to begin with. It can be a lot.
But eventually, you’ll get the hang of your new normal. And that’s something that’s different for everyone.
Below, three people who’ve been living with a life-changing diagnosis share what their new normals look like now, and how they got there. These personal stories shed new light on what it means to be healthy.
Taking charge of ulcerative colitis
Meet Janelle, 41
"I started having bowel issues around 2001 at the age of 20. I thought I might be lactose intolerant. Then I thought perhaps it was irritable bowel syndrome. I cut items out of my diet, but nothing improved. Then I started bleeding profusely every time I had a bowel movement.
I finally saw a nurse practitioner at a gastroenterology office in 2004. I told her about all of my symptoms. She said I either had Crohn’s disease or ulcerative colitis (UC). I had never heard of these before. They scheduled me for an emergency colonoscopy for the next morning.
The colonoscopy found that I did indeed have ulcerative colitis (UC). UC is an autoimmune disease. The body attacks the lining of the colon and rectum. It’s a type of inflammatory bowel disease (IBD).
It took years trying to figure out what worked and didn't with my medications and diet. Then on Christmas of 2020, I suffered again with tremendous pain and blood loss. I learned that my whole colon was inflamed with ulcers. I tried medications, but nothing worked.
A year later, my UC had still not improved. So I was sent to a surgeon to remove my colon. On March 28, 2022, I had ileostomy surgery. Now, waste from my intestines goes through a small opening in my belly into an ostomy bag. I empty it about five times a day.
Having this surgery has been so freeing. I can now leave my house without worrying about making it to a bathroom in time. It has been quite a journey. But it has also been a chance to talk to others about this disease.
When you first get a diagnosis like mine, it’s overwhelming. The feeling of your old self disappears. And you end up trying to figure out this new life of running to the bathroom, horrendous pain, blood loss and feeling tired. Being in remission is bliss, and that is always the goal for each person with IBD. (Remission is when the disease isn’t active.)
Here’s what helps me live a happy and healthy life with UC:
Keep a journal. I tracked my food and bowel movements so I could understand if certain foods made my symptoms worse. Each person is different, and what might be right for one person may not be OK for someone else. My journal helped me figure out what caused problems. I began eliminating those items from my diet.
Get support. I lost so many family members and friends throughout my journey with UC. I suffered many bouts of depression. And it was difficult to want to leave the house, especially when I was dealing with pain at the same time. Consider talking with a therapist. That helped me a lot.
Pamper yourself. It’s so important to let yourself relax. That could mean soaking in a warm bath or getting a massage. You could binge-watch a television series, do yoga or even rest in bed. I do that a lot, even now with my ileostomy. It helps give me a little boost to get things done without overdoing it."
Taking charge of diabetes
Meet Mila Clarke, 32
Diabetes advocate and founder of “The Hangry Woman” blog
"I was first diagnosed with type 2 diabetes in 2016. I had started having night sweats, extreme weight loss, constant thirst and blurry vision. I began taking diabetes medicines, and I improved my exercise and eating habits.
But my blood sugars weren’t budging despite my efforts. In 2020, I went to a new doctor, who tested me for a different type of diabetes.
This time, I was diagnosed with LADA, or latent autoimmune diabetes in adults. This happens when your body attacks the cells that produce insulin. So I added insulin shots to my carb counting and exercise.
I used to think being healthy was just about eating right and exercising. But, I realized that reaching your best health isn't as simple as changing two things. It also means taking care of your brain and finding specialists who listen. You may also want to get your loved ones involved in your journey.
Being healthy is also a commitment to yourself every day. It doesn't mean that your health is going to be perfect, but those small steps matter. And a little bit of effort can go a very long way.
These tips help me live a happy and healthy life with diabetes:
Try to move more. Exercise is one essential way to stay healthy and happy. It might not seem like it in the moment. But that afternoon walk, bike ride, or yoga in your living room is nourishing your body. You’re keeping it healthy and strong.
I aim to get at least 30 minutes of movement five days a week. I also don’t stress if it doesn’t happen, because life happens!
Eat things you enjoy and steer clear of food deprivation. I’ve found that when I have told myself to stay away from food X, I end up just wanting that food even more. Then I’d eat it and wreck my blood sugars.
Now I work hard to ensure I’m not deprived of the foods I love. For me, that looks like baking things a little differently. I experiment in the kitchen. I pair my carbs with proteins and fats to slow my blood sugar spikes. (Learn more about the basics of blood sugar.)
Involve your circle. When I had to deal with diabetes alone, I often felt lonely, stressed and overwhelmed by it. One day when I was taking an insulin shot, a friend asked me what I was doing. And it led to a lengthy conversation about how I maintain my health with diabetes.
Now my best friend, my boyfriend and even my dad check on my blood sugar numbers. They get alerts from my blood sugar monitor. They know what to do if I’m not able to take care of my blood sugar on my own.
Knowing they all have my back is so helpful. On days when I get overwhelmed, I know I’ve got lots of help if I’m willing to ask for it.”
Taking charge of rheumatoid arthritis
Meet Doris M. Liza Espinoza, 58
New York City
“I was diagnosed with rheumatoid arthritis (RA) in January, 2019. I had constant pain and inflammation in all my joints, but especially in my shoulders, arms, hands and fingers.
I was always asking for help opening bottles and jars or carrying bags. I needed help moving boxes and even dressing and undressing.
I also had a lot of stiffness after resting for a long time. I was not able to walk or get up or down stairs, especially in the morning.
On top of that, I was overweight. I gained 24 extra pounds because of the steroids I was taking for my RA. Plus, I was moving very little.
I quit my full-time job, and I worked only a few hours a week with limitations. This led to depression. I felt useless and even had suicidal thoughts.
I tried all kinds of medicines, but nothing seemed to work well enough. I had constant flare-ups that limited my life. But I have never felt better than I do now. This is how I got here:
Try to keep moving. Find something you enjoy: walking, swimming, yoga or gym workout. In my case, it was dancing, specifically, Zumba classes. It’s danced individually. No one has to touch my aching body. I can also choose how long I can dance.
I started slowly at the beginner level, but kept progressing. After several months, I decided to become a Zumba instructor. It has given me the energy my body needed. To me, that’s what being healthy means. I have the energy I need every day and can enjoy time with my family and friends. Zumba brought happiness and lowered my stress.
Learning the steps was a constant challenge for my body and my brain. I lost the 24 extra pounds I had gained and recovered motility in all my joints. I gained strength in my arms and hands. I even made videos to motivate myself. I could see progress every month. And that helped me recover my self-esteem and confidence in my body. Zumba was really my best medicine of all.
Eat more veggies. I was never a person who ate vegetables. But since my RA, I started choosing the best foods that my palate could accept. And I limited my intake of salty, sweet and fried foods, as well as dairy, caffeine and alcohol. I can eat these foods once in a while, but not every day.
I also take vitamin supplements such as collagen, vitamins B, D and E, calcium, magnesium and zinc.
Find ways to ease stress. Don’t think you’re the only one who can solve problems. I was too obsessive and a perfectionist my whole life. I believe that contributed to high blood pressure. That, in turn led to more RA flare-ups. So I learned to take everything easy. I tried not to overthink every little problem.”
There’s one thing each of these women have in common. They were all proactive about finding the solutions. They sought support that would help them feel as healthy as possible. Work with your doctor and care team. Ask all the questions. And let them (and your loved ones) help you each step of the way. Living with a chronic illness may be a long journey, but you don’t have to take it alone.
If you need some extra support, mental health resources from Optum can help. Work with a virtual coach or therapist one-on-one-with AbleTo. Find support now.
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