Life with a chronic illness...just typing that makes my chest heavy. We never expect it to happen to us. I know it was never even on my radar. For a lot of us, our symptoms wax and wane, alternating between good days and bad days. Just when we think we are in the clear we're hit with a "flare" or an intensification of symptoms. For others, the symptoms are constant.
No matter the form, chronic illness completely changes our lives. With it comes a rush of overwhelming emotions; sadness, anger, depression, grief, fear. Life roles can change quickly and drastically, affecting day to day life for family, friends, and coworkers. Work performance & earnings often suffer, treatments can cause debilitating side effects, and stress levels increase. The impacts are far and wide, but us humans are incredibly resilient. We learn, we adapt, we change, we cope, and we can thrive.
I've had my share of personal experience with chronic illness. In the past 6 years I’ve collected quite the battery of labels – celiac disease, fibromyalgia, endometriosis, Hashimoto’s thyroiditis, chronic fatigue syndrome, food allergies, PTSD, candida....I could keep going. During this time I’ve learned a few important lessons that helped me to reframe my experience from one of feeling sick and frail, to one of seeing myself as the strong independent woman that I am.
Aside from my personal diagnoses, I’ve experienced chronic illness from a few different perspectives – as a family member, as a friend, and as a counselor/coach. From these different roles I’ve come to one conclusion, people are incredibly resilient. One way or another we keep on keeping on. Despite the pain, despite the fatigue, despite our symptoms, we do what we have to do to live the best life we can. We might be living everyday with a chronic health condition, but we are certainly not defined by our illness. It is not who we are.
Below are some tips for not just coping, but thriving with chronic illness. Embrace your illness and everything that comes with it.
When we are diagnosed with a chronic illness we are often faced with grieving the life we thought we would have. Sometimes we grieve physical abilities and loss of function, or maybe the loss of hobbies, sports, and activities. Some may lose relationships and others may lose their ability to work. A common experience, and one I know too well, is a loss of trust in our bodies. We often feel betrayed, vulnerable, and bewildered. Whatever the experience, be patient with yourself and allow time to grieve. Don’t hide from it, because it will always find you - usually at the least opportune times.
If you are an emotion number like I am, you may find it helpful to set aside 10 minutes a day to process your grief and let it all out. Crying is incredibly therapeutic and releases toxins from the body. Also make time to express yourself – writing, art, speaking, cooking, moving; find whatever works for you. Work towards acceptance.
2. BE KIND TO YOURSELF
We are usually our own worst critic. Pay attention to that little voice inside your head and set an intention to approach yourself with love. Try to stay aware of your thoughts. If you catch yourself becoming more negative about your experience - challenge it. Challenge those thoughts and replace them with something more positive. You don’t have to believe it at first, but keep saying it. You are wiring your brain for self-love.
You're going to have bad days - we all do. We may even make mistakes (GASP!). You might tank on your diet, or skip a workout. You might stay up too late and pay for it with a flare up of pain and fatigue the next day. You might just wake up, feel like shit, and want to self wallow. Whatever it is - be ok with it. Give yourself what you need in each and every moment and don't beat yourself up over it. Give yourself love and commit to doing better the next day.
3. LIVE WITH INTENT
While much of our experience with chronic is out of our control, there are very real things we all can do to better take care of ourselves and manage our symptoms. So in that sense, you are in control of your own health. Educate yourself on your condition(s), partner with your doctors, advocate for yourself, and make every decision with the awareness that your daily choices do have an impact on your recovery and day to day symptoms. Studies consistently show that what we can an internal locus of control, or the belief that you are in control of your own life/choices/outcomes, is one of the largest predictors of positive health. It is foundational to a healthy mindset and invaluable for coping with the longterm stressors of chronic health condition.
4. SLEEP AND SLEEP WELL
Sleep seems to the one of the first parts of life on the chopping block when we get busy. I can't tell you for how many years I was preaching to clients the importance of sleep for their focus, energy, and physical & mental health, yet I was lucky to get 4 hours of sleep a night.
Poor sleep is linked to decreased immune function, increased cortisol production, weight gain, injury proneness, anxiety, and depression. Sleep allows the body to repair and gives the brain the opportunity to process the day’s experiences. Yes - sleep can help you stabilize weight. In fact, after starting on nightly medical cannabis capsules to control my pain, I began sleeping through the night for the first time in years. Within two weeks I started losing weight and have since lost over 20 pounds - all without making any other diet or exercise changes.
Start a sleep routine and aim for 7-9 hours of actual sleep per night. Go to bed and wake at the same time every day, black out any sources of light in your bedroom, use amber glasses, and avoid screen time after 8pm.
5. WORK, VOLUNTEER, OR BE A PART OF SOMETHING
Stay involved, set goals, and work towards them. When we are feeling sick it is very easy to isolate and lose motivation. If you are no longer able to work, volunteer or find a community activity that you enjoy. Work activities provide structure, community, and a sense of accomplishment; all building a foundation for positive health. Online support communities and Facebook groups are a great way to connect to a larger community and be part of something you believe in. Many patients find it helpful to moderate or participate in groups related to their condition or treatment/lifestyle approaches such as Primal Lifestyle or Florida Medical Cannabis Patient groups.
6. LEARN YOUR LIMITS AND STICK TO THEM
If there is one thing on the list that I’m horrible at, it’s this one, and I know I’m not alone. The majority of individuals with autoimmune disease are type A personalities. We tend to be competitive, work-a-holics, over-achievers, and are always working on a list of things to do. It makes setting limits difficult.
When we are having a good day, it’s natural to want to do it all. Unfortunately, that often sets up a cycle of bad days and increased symptoms. It’s OK to push yourself towards more, but listen to your body. If you start to notice an increase in symptoms or you just don’t feel well after certain activities, break them down into smaller pieces until you figure out your limit. If you need to journal your symptoms and activities for better awareness, do it. Enjoy the things you love, but know if you want to do them for the long term you need to listen to your body. It took me years of practice, coaching, and a good therapist to get me to start really respecting my limits.
7. DO A LITTLE DANCE AND HAVE SOME FUN
Set aside time to play. Find a hobby. Spend time laughing with family and friends. Make it a point to try new things and share in new experiences. Did I say laugh? Laugh a lot. Positive emotions promote positive behaviors. Start simple - find a new game online, do a crossword puzzle, or watch funny videos on Youtube.
8. EAT WELL AND EXERCISE
While this ties back to number 3, it goes without saying. Take care of your body - eat whole, real, and nutritious food and move. Both your body and your mind needs proper fuel. Figure out what foods work best for you and eat more of them. I've found that a paleo or primal lifestyle is a great starting point for figuring out your own personal food template. If you need guidance, check out my health coach offerings.
Exercise, but stay within your limits. Start slow and work your way up. Exercise assists with the production of endorphins, those feel good brain juices that put us in a good mood. Exercise will improve both your physical & mental health and will give you a sense of accomplishment. Find something that is fun for you. Chronic cardio and chronic illness don’t mix so there is no need to spend hours on a treadmill or elliptical. Opt for moving frequently at a slow pace - like regularly going for walk, bike ride, or hikes. If you are able, lift heavy things a few times per week.
9. KEEP STRESS IN CHECK
Stress has an incredible influence on both our physical and mental health and living with a chronic illness is inherently stressful. Stress increases the risk of disease, can cause flare ups of chronic illness, and can lead to depression, anxiety, and decreased productivity. Being mindful of how your stress levels are affecting you and taking an active role to mitigate it can make a big difference in day to day symptoms.
Stress management activities:
Color! Adult coloring books are all the rage and amazingly calming.
Go for a sensory deprivation float, sauna session, or massage.
Take a walk or exercise.
Read a book.
Play music or dance.
Share your experience - start a blog or talk to a friend.
Write in a journal.
Engage with others. Be part of a community.
Take a class. Check out your local library, community college Adult Ed, or YMCA.
It’s also important to limit unnecessary stressors. Avoid situations that you find stressful, practice setting boundaries & saying no, manage your time, look at situations from different perspectives, and don’t try to control things that you cannot control. Accept what is and be responsible for your own reality.
10. STAY CONNECTED TO YOUR SUPPORT SYSTEM
I think there is two important pieces to support as someone with a chronic illness - being OK asking for help and staying tuned into your loved ones needs. Just like the person diagnosed with a health condition, family and friends experience loss and role changes. Make it a point to look at things from their perspective. Talk to them, be open about your experience, and make sure you are keeping a dialogue about what you can be doing for each other to make the changes and stress easier to manage. If you need help ask for it, and do it without guilt. Be direct with what you need.
While it’s important to have an open dialogue about the affect of the health condition on the relationship, it’s also important to have a time to forget about it all. Make time with your partner and loved ones to reconnect. Schedule the time if you need to. No talking health, treatments, or any thing related. Do something fun, love each other, and engage. No cell phones, no tablets, no computers. Just each other.
It's also helpful to reach out to others who have been there. The internet is a never ending resource of support, guidance, and friends. Look for online Facebook support groups and message boards for people with your condition or attend local support groups. Hospitals and community centers normally publish a list of regular meetings.