Coping with Sarcoidosis (and other serious illnesses)

Hello team!
In a past meeting, we had addressed the topic of Coping and Recovery and it came up again as our main topic of conversation at our last meeting. In preparation for a presentation at the Rare Disease Conf in Boston, I added some additional commentary to our support group’s discussion points and created this summary. I found myself wanting to know more about coping with serious illness or injury and did some additional research on the subject. I even took the opportunity to contact a psychologist friend of mine to learn more about this all-too-common issue. Instead of sending you some notes in bullet point form, I decided to write an article to put on my site and pass along to my fellow support group leaders who might want to deal with this topic in their groups.

COPING WITH SARCOIDOSIS (and other serious illnesses)
By: Mark Landiak

So you’re sick. But how do you feel?

It seems most sarcoidosis patients have to learn to cope with their diagnosis and the myriad of mental and physical challenges that occur during the recovery process.  Our recent support group meeting discussed the topics of Coping & Recovery.  This article will focus on Coping and provide some strategies for coping taken from our members comments and some info provided by professionals on the subject.

Coping is an important element in the healing process. Every patient (and their family and friends) must deal with the unknowns that surface with a bad diagnosis. This is especially true in the case of rare disorders where the patient population is relatively small and many in the medical profession don’t see enough cases to know how to recognize and diagnose it – much less treat it effectively.  Questions run through the patient’s mind. What’s wrong with me? Am I going to be OK? Will my family be OK?

For many, there is the physical and emotional roller coaster that accompanies the process of getting an accurate diagnosis. This can take several months or even years. To say the least, it’s frustrating not knowing.  The treatments that doctors “try” can bring side effects that make one feel even worse. And once they know definitively what you have, you must cope with the day-to-day grind of trying to get better. Unfortunately, most physicians deliver their diagnosis and prescribe a treatment plan, but don’t provide much if any advice about how to cope with the fear and anxiety that accompanies less than favorable news. Given the state of healthcare, once patients leave their doctor’s office, they are largely on their own to deal with the emotional elements.

The strategies we choose to employ depend upon the severity of our disease and the well from which we draw emotional and physical strength.  As my friend Deb Davis says: “I own my disease. My disease does not own me.” These are important words if we want to effectively help ourselves to cope. Remember, “We choose.”  I’ve talked with well over 100 patients in the hospital, in groups, at work and at events who seem to be coping well with their illness or injury.  Patients who seem to cope well all seem to share some commonalities.

  • They choose to make a conscious effort to take positive actions that help them to cope.
  • They seek out and act upon the strategies and actions that work for them to feel more in control of their situation.

For purposes of the patient audience, allow me to define Coping strategies as the specific actions that you can take (both physical and emotional) to help you tolerate what comes your way and put your mind and body in the best position to heal.

A study by Folkman & Lazarus categorizes two types of general coping strategies:

  • Problem-solving strategies are efforts to do something proactive to alleviate stressful circumstances
  • Emotion-focused strategies involve efforts to regulate the emotional consequences of stressful or potentially stressful events.

I think their insights are good for everyone involved: patients, caregivers and physicians.

First we need to take into account the personality and makeup of the individual. Are they a natural fighter or more anxious.  Some are wired to go into the problem-solving mode while others may be more fearful, cautious and anxious and employ strategies to help them cope with the emotional side of the healing process.  This is different than the ego-centric individual who thinks they can go it alone and come out just fine. I’ve seen several of these patients fold when the personal well runs dry. Patients should talk with their doctors and family about each of these elements AND what they need/expect from the medical team and people around them.

An additional distinction that is often made in the coping literature is between active and avoidant coping strategies. Active coping strategies are either behavioral or psychological responses designed to change the nature of the stressor itself or how one thinks about it; whereas avoidant coping strategies lead people into activities (such as alcohol use) or mental states (such as withdrawal) that keep them from directly addressing stressful events. Active coping strategies, whether behavioral or emotional, are better ways to deal with stressful events while avoidant coping strategies appear to be a psychological risk factor or marker for adverse responses to stressful life events (Holahan & Moos, 1987).

You’re thinking, “enough with the theoretical stuff Mark. Tell me something tangible.

OK, so here is my list of strategies for coping and recovery taken from the book, “Getting Better,” by yours truly. Use this as a checklist to determine which ones you already employ and do well, which ones you want to take action on and which ones you don’t think apply to you. Review this list with your caregivers as appropriate and see if you don’t end up with a solid plan for feeling better and getting better. I’ll bet you do!

32 Coping Strategies for Getting Better
For better or worse, these are the strategies that I’ve learned to use over the last 7 years of coping with my disease. Maybe some of them can be relevant for you. Each is worth some reflection and consideration:

  1. Make a conscious decision to takes steps to minimize or eliminate the negatives that can erode your ability to cope.
  2. Take steps to minimize stress with Meditation and use of Relaxation Techniques – This can include deep breathing techniques, relaxation skills, massage and muscle relaxation. All are meant to reduce stress and rid the mind of worry. (Full disclosure, I do very little of this and am adding this to my list).
  3. Eating healthy: A healthy diet can improve both your physical health and mental health. But what is a “healthy diet?” I think it is different for everyone. My wife feeds me a balanced diet of organic fruits, veggies, fish and meat and I try to stick with that when travelling. However, I’m far from perfect as indicated by a chapter in my book titled: “Hanging Out with the Pecan Sandie Girl.”
  4. Drink Anti-inflammatory teas (green tea), a little red wine and treat yourself to a piece of dark chocolate,
  5. Stay hydrated: Carry a water bottle with you and sip throughout the day. Drinking more water can help reduce side effects from some meds.
  6. Talk to a nutritionist about your condition and mental state and design a plan to share with your doctor.
  7. Be your own best advocate when working with doctors by writing down questions and asking them to explain what they are talking about in terms you can understand. Talk to them about how you are coping and ask for their advice. Let me emphasize: more drugs should be a last resort after trying some of these other ideas. I believe the less chemicals you put in your body, the better…That said, after multiple consultations and a couple of life-threatening incidents, I’m forced to take a handful anyway.
  8. Med Maintenance: Take your medications as directed, but talk regularly to your doctor about new symptoms and perhaps apportioning your meds differently in an effort to reduce side effects.
  9. Chart your progress and symptoms and log it all to share with your docs. Keep a journal.
  10. Listen to your favorite, calming music.
  11. Do something you enjoy every day: cooking, gardening, attending events or playing sports, pleasure reading, etc
  12. Time to Yourself: It is important to set aside time everyday to allow yourself to relax and escape the stress of life. Give yourself a private, mini vacation from everything going on around you. Allow yourself to feel good when you feel good.
  13. Reading: Reading can help you to de-stress by taking your mind off everyday life.
  14. Friendship: Having friends who are willing to listen and support you through good and bad times is essential. You can make new friends who will understand in support groups .or online sites like
  15. Join or start a Support Group of people who wrestle with the same condition as you do.
  16. Let your family and friends know what you need from them. Keep family informed.
  17. If you’re inclined, pray more (join a prayer group or get a prayer buddy). When times get tough medically and your ego well runs dry, do you have a higher source from where will you can draw your strength.
  18. Keep a positive attitude by smiling and laughing a lot even when you don’t feel like smiling at all. Project a positive outlook to everyone you meet. Don’t rehash the specifics of every little detail that ails you. That’s could make them sick too!
  19. Seek out humorous things/events/people and laugh as much as you can. The prescription I wrote for myself is 25mg of Serious and 75mg of Humor.
  20. Physical Activity: Moving around and getting the heart rate up causes the body to release endorphins (the body’s feel good hormones). Exercising provides some stress relief.
  21. Exercise as you are able: take a short walk, use a piece of exercise equipment, take a yoga class, or find some other way to move your limbs, stretch your muscles and burn some calories.
  22. Moving from Pt.A to Pt.B: Make sure you understand your current position (Pt.A) and take the time to write out your desired state (Pt.B). What are your milestones along the way? By when do you forecast to reach them?
  23. Visualize your happy place, or if possible, get in the car or on a plane and go there (or get someone to take you there).
  24. Volunteer at a local hospital, church, nursing home, etc
  25. Do nice things for other people – even if it’s a small thing and seems insignificant. It might not be insignificant to them.
  26. Let’s do lunch: Invite a family member or friend to breakfast or over for lunch just to socialize. Don’t get stuck talking about all your problems.
  27. If possible, walk daily (with a friend or dog)
  28. Get outside: Enjoy the nice weather – unless you live in Chicago during the winter like I do. Remind me to thank the inventor of the treadmill.
  29. Hobbies: Having creative outlets such as listening to music, drawing or gardening are great ways to relax and relieve everyday stress.
  30. Spirituality: Actively believing in a higher power or divine being can have many health benefits. In recent studies, it has been found that people who pray have better mental health than those who do not.
  31. Pets: Taking care of a pet helps distract the mind from stressful thoughts. Studies show that pets are a calming influence in people’s lives.
  32. Sleeping: The human body needs a chance to rest and repair itself -especially after a long and mentally or physically stressful day. Sleeping makes sure that the body is ready to perform another day. Take Naps when fatigue sets in or you are just physically exhausted. 

There are also negative coping skills which can hinder progress in dealing more positively with stress. Actions that are harmful to both mental and physical health include:

  • Drugs
  • Excessive alcohol use
  • Self-mutilation
  • Ignoring or storing hurt feelings
  • Sedatives
  • Stimulants
  • Excessive working
  • Avoiding problems
  • Denial

These actions offer only temporary relief, if any, from stress. Ignoring or covering up how you feel does not solve the problem and the next time the situation arises, you will still have no way of dealing with it.

The next time you find yourself faced with a difficult or stressful circumstance, remember to practice your new coping skills. These skills lead to good mental health and happier you.

Ten Tips for Better Mental Health

  1. Build Confidence – identify your abilities and weaknesses together, accept them, build on them and do the best you can with what you have.
  2. Accept Compliments – many of us have difficulty accepting kindness from others but we all need to remember the positive in our lives when times get tough.
  3. Make Time for Family and Friends – these relationships need to be nurtured; if taken for granted they will dwindle and not be there to share life’s joys and sorrows.
  4. Give and Accept Support – friends and family relationships thrive when they are “put to the test.” Just as you seek help when you are having a tough time, a friend or family member might come to you in their time of need.
  5. Create a Meaningful Budget – financial problems are big causes of stress, especially in today’s economy. Over-spending on our “wants” instead of our “needs” can compound money worries. Writing down where you money is going helps you keep a closer eye on your finances.
  6. Volunteer – being involved in community gives a sense of purpose and satisfaction that paid work cannot. Find a local organization where you life skills can be put to good use.
  7. Manage Stress – we all have stressors in our lives but learning how to deal with them when they threaten to overwhelm us will help to maintain our mental health.
  8. Find Strength in Numbers – sharing a problem with others who have had similar experiences may help you find a solution and will make you feel less isolated. Even talking about situation with people who have not experienced what you are going through is a good way to gain outside perspective.
  9. Identify and Deal with Moods – we all need to find safe and constructive ways to express our feelings of anger, sadness, joy and fear. Channeling your emotions creatively is a wonderful way to work off excess feelings. Writing (keeping a journal), painting, dancing, making crafts, etc. are all good ways to help deal with emotions.
  10. Learn to Be at Peace with Yourself – get to know who you are, what makes you really happy and learn to balance what you can and cannot change about yourself.

About Getting Better™

Getting Better is a book based on my experience as both a patient and a caregiver of someone who was terminally ill.  Getting Better is a resource aimed at bringing inspiration and practical strategies on Coping and Recovery for: patients, friends, and family members in your area.  We deliver workshops on this topic as it relates to those struggling with Sarcoidosis and other diseases.  This program is great for churches, company wellness programs and hospital/clinic staff.

To inquire about bringing these, or other wellness presentations to your area/organization, or   To order copies of our book: “Getting Better – Healing Prescriptions for Patients, Families & Friends” for meetings and events, call Mark Landiak directly at 630-267-9800.

100% of the net proceeds from book sales go to FSR (or sponsoring organization) for patient research and assistance.

Copyright 2019 Getting Better by Mark Landiak. Reprints only with permission. All rights reserved.