Life with a chronic condition is extra trying. We never expect it to happen to us. A chronic illness is a medical or mental health condition that sticks around for longer than three months. For a lot of people it is like a gnat. It’s buzzes in your ear, reminds you it’s there, and then disappears. Just when you think the gnat is gone for good, bzzzzzzz. It pops back up. Symptoms can have a relapsing course, alternating between good days and bad days. For others, 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 definitely have my share of personal experience with chronic illness. In the past 4 years I’ve collected quite the battery of labels – celiac disease, fibromyalgia, hashimoto’s thyroiditis, chronic fatigue syndrome, food allergies, MTHFR, genetic mutations, and candida. During this time I’ve learned a few important lessons that helped me to reframe my experience from one of feeling sick, to one of seeing myself as the rockstar I am. I tend to view things from the perspective of autoimmune disease, but the lessons below apply to any health condition.
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. From these different roles I’ve come to one conclusion, we are straight up warriors.
Say it with me: “I am a warrior!”
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 inner warrior!
Be patient with yourself and allow time to grieve. Don’t hide from it. Chronic illness surfaces multiple circumstances of loss. A common experience, and one I know too well, is a loss of trust in our bodies. We often feel betrayed, vulnerable, and bewildered. Other losses include ability & function, intimacy, lifestyle, relationships, roles, structure, hobbies, jobs and earning power.
It is normal for grief to sneak up and knock you in the face completely out of the blue. It’s ok. Let it happen and accept that it is part of the road towards healing. Crying is incredibly therapeutic and releases toxins from the body. Set aside at least 10 minutes a day to process your grief and let it all out. Also make time to express yourself – writing, art, speaking, cooking, moving; find whatever works for you. Work towards acceptance.
2. Be kind to yourself.
Pay attention to the voice inside your head. Be aware and change any negative self talk to positive talk. You don’t have to believe it at first, but keep saying it. You are wiring your brain for self-love.
You will have bad days where all you want to do is loathe in self pity. You will have days where you don’t eat the right thing, or skip a workout, or binge on netflix. Do it, enjoy it, and then restart the next day. We all need it sometimes, but don’t make it a habit and under no circumstance beat yourself up about it. Take from the experience what you can and rock out the next day instead.
3. Live with intent & take control.
You are in control of your own health. Educate yourself on your conditions, 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. An internal locus of control is one of the largest predictors of positive health. It is the belief and understanding that you are in control of your life, choices, and outcomes. For me it is the foundation of a healthy mental health approach and invaluable for coping with the longterm stressors of chronic health condition.
3. Sleep and sleep well.
Sleep seems to the one of the first parts of life on the chopping block when we get busy. Early on in my healing I started focusing on my sleep hygiene. At the time 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.
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.
4. Work, volunteer, and be a part of something.
Stay involved, set SMART 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 will enjoy. Work activities provide structure, community, and a sense of accomplishment; all building a foundation for positive health.
5. 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 can be a bit competitive, work-a-holics, over-achievers, and 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.
6. Do a little dance and have some fun.
Set aside time to enjoy a hobby. Spend time laughing with family and friends. Try something new. Did I say laugh? Laugh a lot. Positive emotions promote positive behaviors.
7. Eat well and exercise.
Eat whole, real, and nutritious food. Your body and your mind needs proper fuel. Luckily you are in the right place for some scrumptious and healthy recipes! Figure out what works for you. I’m a full believer that Paleo is a great starting place to figure out your own personal food template.
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. With doctor’s clearance try weight lifting.
8. Keep stress in check.
Learning proper ways to manage you stress levels is essential to maintaining a positive outlook and improving your physical health. Living with a chronic illness is inherently stressful. Chronic stress takes an enormous emotional & physical toll on our bodies. Many people experience depression, anxiety, decreased mental clarity & focus, energy, and productivity. Stress increases risk for disease and can trigger a flare up of autoimmune disease and symptoms.
Every day make sure you do at least one thing to reduce your stress levels.
Stress management activities:
- Get an adult coloring book & color. Crayon’s make it more fun.
- 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.
- Write in a journal.
- Engage with others. Be part of a community.
- Take a class.
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.
9. Focus on intimacy.
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.
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 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. Laugh. Have sex. Cuddle. Laugh. Talk. Laugh some more.
10. Find and accept support.
It’s ok to accept and ask for help.
Most people love helping other people. It makes the happy brain juices flow and just plain feels good to assist someone in need. But how often do we fail to accept help that has been offered? We don’t want to be a burden. We don’t think the offer was sincere, they were just saying it to be nice.
Identify the things that you truly need help with. Then make a list of people that have offered help in the past or that you would be comfortable approaching. Choose one person and reach out to them and ask them if they can help you. Don’t leave it open, ask directly for what you need. For example, “Can you pick up my laundry every Wednesday?” vs “You think you can help me by picking up my laundry sometimes?” Chances are they are going to be thrilled to help and happy to hear from you. Being direct with your request sets it in action.
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. The Hashimoto’s 411 FB group has been an incredible resource on my journey!
If you have any questions or comments please contact me!