10 Tips for Living Well With Chronic Illness
Chronic Illness Changes Your Life
Life changed drastically when I was diagnosed with lupus.
The life I thought I would have was permanently altered, and learning how to cope and live well despite these changes wasn’t easy.
I hope that the following suggestions will help as you navigate your path. The thoughts I offer here are borne from almost 5 years of chronic pain, and over 10 years of life with a chronic illness. I hope my words are helpful to you.
What is a Chronic Illness?
A chronic illness is a medical or mental health condition that sticks around for longer than three months.
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 lives.
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.
1. Take Your Self-Care Seriously
This tip can be applied to everyone....not just those who are chronically ill.
Take your self-care seriously!
You've taken care of the house, the kids, your significant other. You've run the errands. You've done everything necessary for your job, and still found time to volunteer. You've helped out a friend, but in the midst of all this hustle and bustle, have you forgotten about someone?
What happens to a car that does not get maintenance? Sometimes it encounters mechanical failure. The same can happen to the body. I understand it is not always easy, but it is necessary, and it does not have to be extravagant to be effective.
Ideas for self-care:
- Have an Epsom salt bath soak.
- Go for a walk.
- Have a massage.
- Read a good book.
- Buy yourself flowers.
- Get a manicure/pedicure.
- Have Merry Maids come in and clean your house.
- Take yourself out to dinner and a movie.
- Stop comparing yourself to others.
- Create joyful rituals such as lighting candles, and having a cup of herbal tea in your special place.
- Do yoga for a few minutes a day.
What is your favorite self-care activity?
2. Stop Driving With Your Emergency Brakes On
With most chronic disabilities our symptoms vary in intensity from day to day or even week to week. We need to be constantly in touch with our body. Dealing with this is made even more frustrating because friends and family may not understand these ups and downs. The prevailing belief in our culture is that when people get sick they get well or on rare occasion die. The assumption is that the doctor can fix almost anything. With chronic illness we don't fit into that mold.
You may be surprised that once you pace yourself you can actually do more of the things you really care about. As you slow down and find time to relax you are giving your body a chance to build up strength and perhaps heal a little.
- Do what you can when you can.
- Schedule rest into your day and regular routine.
- Find an online or local group to meet with regularly.
- Consider asking for help when life gets overwhelming.
However, don't be so cautious that you forget how to have some fun.
3. Be Transparent
I have been working at living my life transparently.
To live my life transparently means that I live my life openly, that I share what I’m going through, my ups and downs, my successes and failures, my struggles and disappointments as well as my successes and happy moments.
To live my life transparently does not mean that I am not afraid of being vulnerable, but that I am alright with sharing that vulnerability with the world. Recently I started a 101 Days Challenge in which I created a painting as well as shared a little of the background surrounding why the painting was done. Some days were painful to share, but the response received from it was worth it.
The decision to live life transparently was not easy for me. It took a long time for me to get to this point, to be ready to share. It took a long time to get past the fear of exposing myself, the fear that if people knew the truth about me, they wouldn’t want anything to do with me, if they knew how sick I really was, they wouldn’t want anything to do with me.
If you suffer from a chronic illness chances are you have seen the television movie about Toni Braxton “Toni Braxton: Unbreak My Heart”. I’ve always loved her voice, and since finding out she lives with lupus (Systemic Lupus Erythematosus) I’ve become more interested in her and life. It prompted me to wonder how open I was being about my own journey with chronic illness.
The movie was interesting because she tried to hide her illness from the public and even close family and friends for many, many years, even though the very act of hiding it brought about so much stress in her life, stress she would have been better off, and perhaps healthier, without.In one scene she goes to an event where she makes her first public speech and confession about her life with lupus.
For a long time I hesitated about sharing anything about my battle with lupus, neuropathy, arthritis or any of the other diagnoses I received for fear of being shunned, being shamed, being misunderstood.....much of which actually happened, but I have thrived despite.
I had decided that it was better to hide it than to be truly honest about it as I assumed people would consider me pathetic, attention seeking, useless and so many more negative things. This means that I rarely reached out for the support I needed (partly due to the fact that I am an extremely independent and determined person), which made my suffering more isolating and difficult, and it also means that ultimately I wasn’t being honest which prevented me from forming deep connections with people.
In the end it left me with a great deal of resentment, blaming people for not understanding, or making the effort to understand, or for not helping me, but I realized that I had not really let people know what I had been going through. How could they know? Why do I feel the need to hide my illness? It is part of me...although I pray daily for a cure. I don't want to be sick.This was never any good for my health or my life, and I see others repeating the exact same patterns and ruining their relationships in the process.
I finally stopped assuming people knew what I was going through, and made sure they knew by being open, honest and frank about my condition. After that, things changed so much for the better. I found myself with the support I needed, I had options when I needed help, suddenly my cancellations weren’t a big deal as my friends understood my reality so much better, and so many burdens were lifted.
I urge you to be upfront and honest about your conditions, particularly with those who love and care about you. Those that really care never come close to believing you're attention-seeking, pathetic or useless.
4. Don't Spend Your Precious Energy Worrying About Others' View Of Your Medical Condition
Remember that some friends and family won't understand what you're going through, especially when you look the same on the outside.
True friends will stick with you no matter what!
Everyone feels let down by others at times. More likely than not, it has to do with what’s going on in their lives, not yours.
To the extent possible, stick with those who support you.
That said, some people may genuinely feel supportive of you, but not be good at showing it. We do a poor job in this culture of preparing people to be around illness and pain. For many people, supporting loved ones in need is an acquired skill.
Don't spend your time worrying about how others view your medical condition.
Instead, spend that precious energy taking good care of yourself, and don't forget to thank your caregivers.
But you don't look sick....
5. Research Your Conditions and Every Possible Treatment
Knowledge is power, so research your condition and every possible treatment.
- Get advice from a number of sources, including second or third opinions of your doctor’s treatment plan.
- Try not to compartmentalize your treatment plan. For example, don’t feel like you have to choose between “traditional” or “alternative” medicine.
- You will probably find a measure of success by utilizing the best options from both categories.
Following your doctor’s plan may help, but you will still need to make changes in your daily habits in order to feel better.
- For instance, taking insulin will help the newly diagnosed diabetic, but he will also have to make good food choices in order to prevent uncomfortable and potentially life-threatening highs and lows in blood sugar.
Eating whole (real) food will give you more energy.
- Processed and fast foods don’t provide many nutrients that will help you feel better.
- Sugar makes you feel worse because of blood sugar highs and lows that affect your energy level.
- Taking a good multivitamin will help you have more energy as well.
If you want to try supplements, find a reputable company to purchase from.
- Research your condition to see which supplements might help your particular illness/problem. Some supplements have fillers that won’t provide you with the desired effect.
- Remember that supplements aren’t regulated by the FDA and not all supplements have the research behind them to guarantee a safe, risk-free product.
Look for online information that can help you determine if a supplement has side effects or will interact with your prescription medications.
- This last step is extremely important, as some supplements can and do interact with medications you might be taking.
Remember that prescriptions medicines may help in the short-term but may cause additional problems later because of unwanted side effects.
- All medicines have side effects. This doesn’t mean you should automatically reject these medicines or stop taking them if they are giving you the desired/needed effect.
- You will need to weigh the benefits against the potential side effects. Don’t continue taking a medicine that is not helping you.
Find doctors or specialists you trust.
- Of course, there are certain limitations to this because of insurance plans, but finding someone you’re comfortable with can make a huge difference in treatment, especially if you have to see somebody on a regular basis.
- If you don’t fully trust your doctor or if you don’t think their approach to your treatment is a good match for you, find somebody else! If you can’t communicate openly with your doctor, they might not be able to provide you with the care you need.
6. Continue The Activities That Make You Feel Good
Continue the activities that make you feel good, and don’t feel the need to continue those activities that make you feel bad or drain your energy. Doing things just to satisfy others’ expectations may not be worth it in the long-term. This is your life you are living, not anyone else’s, and trying to constantly meet others’ expectations may deplete you. Decide which things are important for your life, and do those things. Don’t spend a lot of time with people that deplete your energy, either. Invest in the relationships that are important to you, and let the people go who are not helping you be the person you want to be and live the life you want to live. You only have a certain amount of energy, so you must use it wisely.
- Scrap booking
- Creative journaling
- Doing puzzles
- Stamp collecting
Don't let your pain stop you from finding out what you would enjoy doing, or keep you from enjoying your interests.
Make a list of 3 things you would enjoy doing, or have enjoyed in the past.
These are the things you should start with. It may be painful and draining at times, but they will also give you reasons to keep strong during your illness and the setbacks that sometimes come with illness.
7. Don't Be Afraid To Tell Your Doctor What Medications Work and What Doesn't Work For You
8. Sleep Well and Keep Stress in Check
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
Sleep allows the body to repair and gives the brain the opportunity to process the day’s experiences.
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
- decreased mental clarity & focus
- decreased energy
- decreased productivity
- increases risk for disease
- 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.
9. Put Life In Perspective
- Help others when you can.
- Reaching out to others in need can ease the pain of isolation and also give you welcome respite from always thinking about your health.
- 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 will enjoy.
- Work activities provide structure, community, and a sense of accomplishment; all building a foundation for positive health.
10. Don't ever give up on your dreams!
This tip is applicable to anyone with a dream! Tip for living well with chronic illness: Setting goals and creating dreams is important when living with a chronic illness. Don't ever give up on your dreams!
Dreams keep you alive, and goals help you to get where you want to go.
When I was a little girl I wanted to be a Black Belt. I watched all the Chuck Norris films and shows, plus all of the Bruce Lee movies. When I got older I though it was too late until my kids' instructor walked over to me with a uniform, and in a stern voice, said, "Go and put it on!" Three years later, at the age of 35, and after much hard work and training, I was awarded my black belt. I am now a Second Degree recommended Black Belt, so I have to work to get my full rank.....just another goal to reach.
I set goals every year and check them off as they are accomplished. Setting goals:
-keeps you moving forward
-helps build your self esteem
-gives you hope
-keeps you grounded
-helps you realize that you still have a Gift to offer to the world.
When you have a chronic illness you may have to make adjustments to how you accomplish your goals, and how fast, due to setbacks from theillness......but don't ever give up on them!!
BONUS: 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.
I've written several articles about my experience with lupus, but here are two that may be especially helpful:
© 2017 Gina Welds Hulse