“Trauma permanently changes us.” Trauma comes in many forms… but one form many of you can relate to is the trauma of a chronic illness. I often explain to others that those struggling with chronic disease are stuck in a never ending cycle of grief. With each new symptom, set-back, medication, or new diagnosis we begin the cycle over again. Mentally, it can be very exhausting, not only on us, but on our families. To cope, here are some things that have helped me:
Remove those from your life who are toxic. For me, this meant distancing myself from certain friends and family members, the ones who sucked all the life, energy, and joy out of me. This was a very hard lesson to learn (especially where family is concerned), but when the stress repeatedly made me physically ill, enough was enough. I had to protect myself and I had to establish healthy boundaries.
Keep your life as stress-free as possible and don’t stretch yourself too thin. I easily get overwhelmed when I have too many commitments/activities scheduled, which is easy to do when you have children. I do schedule activities, but I’m very picky with the ones I commit to, and I regularly go for months without scheduling anything – simply to give myself a break from running around. Even the act of shuffling kids to different places can exhaust me.
Recognize what grounds you, and focus your attention on that. For me, there are 3 main things that ground me:
1. My faith. I would be lost without Christ, the hope He gives me, and the freedom I find in prayer.
2. My family – especially my children, because they count on me to take care of them. They make me want to put one foot in front of the other every single minute of every day.
3. Cooking/baking and this website. It’s my passion. I find comfort in helping others – even if it is in the form of recipes. 😉
3. Cooking/baking and this website. It’s my passion. I find comfort in helping others – even if it is in the form of recipes. 😉
Connect with others who also struggle with chronic illness. Find your tribe, the people you can be 100% yourself with, and will support you regardless of your circumstances. This one has been especially helpful for me, as I’m a part of several chronic illness Facebook groups specific to the diseases I have. We compare symptoms, medications (including their effectiveness/side effects), swap diagnosis sob stories, etc. Overall, we just support and encourage each other.
Over time, some of these people I’ve become close virtual friends with, and I can’t imagine my life without their online presence. Does that sound funny? I’m sure to some it does, but to me, these people have come along side me through some of my darkest times… because they GET it. They understand because they’ve been on a similar journey. They have literally “walked a mile in my shoes.” Not in every aspect, of course, but in the aspects that really count.
If you battle depression, seek therapy/counseling. After the birth of my first daughter, I sunk into postpartum depression that lasted over 2 years. Ironically, also after her birth was when the first symptoms of my psoriatic arthritis presented. Doctors repeatedly diminished my symptoms, pain, and several eluded to it all being in my head. I felt like I was being hit on all fronts – medically, my home life was miserable, my job was stressful, and I was still trying to figure out how to be a mom (I had zero experience with babies).
Finally I sought counseling, and over the course of about a year, I fought and prayed my way out of depression. BUT, I would’ve never been able to do it without the help and guidance of my therapist. She was key in my recovery, and I wouldn’t hesitate to go back if I felt like I needed to. There is NO SHAME in seeking help to better yourself mentally, and don’t ever let anyone convince you otherwise.
Use pets as therapy. We have two crazy yellow labs. Thor, is 4, and our puppy, Lily, is almost 7 months old. When I’m flaring and not feeling well, their companionship and loyal, unconditional love is calming. But if you’re not a dog person, a cat, bird, guinea pig, etc. can all have the same effect if your situation allows for one.
Be gentle with yourself when you need to do nothing but rest and relax. Everything else can wait. I experience flares, and when I’m flaring, my body will fail me. Whatever else I planned goes out the window. I don’t have a choice but to succumb to doing nothing. Sometimes I beat myself up about not being able to clean the house, make what I consider a “decent” dinner, or be wonder woman. When negative self talk creeps up, beat it back by mentally listing everything you HAVE accomplished, however big or small it is. Sometimes the act of simply taking a shower and/or putting on clean pajamas is a feat in itself. Remember that. Your body needs time to recover. If you don’t rest, chances are your flare will get worse and/or last longer.
Pray, meditate, have lunch with a close friend, listen to music… do whatever brings your spirit joy. Life is so precious. Take time to watch the sunsets. Buy flowers for yourself. Eat the cake. Drink the wine (not unless you can’t have alcohol with your meds… then by all means, don’t drink the wine!).
Don’t be ashamed to take the medicine. I know it’s scary. I’ve been there. It took over 7 years to finally find the medication that works for my body. The pain pills, anti-inflammatories, the immunosuppressant drugs (biologics… a.k.a chemo therapy)… I’ve had some pretty gnarly reactions. Some of the medications made me so ill my diet was reduced to gluten-free bread and noodles, chicken broth, and rice. I’ve never wanted to take medication, but there’s only so much pain and exhaustion one can take before they break.
Both times I took the immunosuppressant drugs (I’ve tried both Humira and Enbrel), I did it for my family. I was so miserable they were miserable. I couldn’t be the mom or wife I needed to be, and they struggled with seeing me in so much pain. Ultimately, those medications didn’t help me, but had I not tried them, I would have never known what worked and what didn’t.
Currently, I take Low Dose Naltrexone daily, but I also have Meloxicam, Tramadol, and Hydrocodone in my arsenal for pain. Part of me has always been ashamed I haven’t been able to “fix” myself or make myself “well” with diet and natural supplements. But, the reality is, I’ve literally tried everything (you can read all about that here), and it just wasn’t enough. Diet + medication is how my body best deals with my chronic illnesses.
Indulge in material things that bring comfort and help you cope with your chronic illness. Surprisingly, I am not talking about food here (although dark chocolate and a good glass of red wine is definitely high on my comfort list!). 😉 I’m talking about the 8 pairs of Birkenstocks I own, because Birkenstocks are the only shoes that don’t hurt my swollen feet. I’m talking about the queen sized electric blanket I have on my bed because I’m always cold, and when I get cold I get really stiff. Or the lavender essential oils I add to my epsom salt baths that smell nice and help me relax. Am I giving you permission or telling you to be frivolous in your spending? Heck no. I’m simply stating that if there’s something that helps, indulge if you’re able.
Find your new normal, keep trying to make peace with your new normal, and embrace who you are… chronic illness included. BUT, don’t deny yourself grief. This is a mixed bag. Something I constantly battle.
The positive of my “new” normal:
People often say, “Your disease does not define you,” but I disagree. My diseases have molded me and shaped me into the person I am today. Without them, I wouldn’t be as compassionate of a person. My own pain has made me extremely sensitive to others suffering.
The negative of my “new” normal:
I miss hiking and being able to walk endlessly without pain. I will never be able to run a marathon and I have limitations now that I absolutely despise. My right Achilles has been swollen now for 5 years… we’re basically just waiting for it to rupture.
I’ve worked hard to make peace and cope with this “new” normal, but how do you make peace with the negative?! Is there really such a thing?
I don’t know, but I’m going to keep trying.
Every day can be a mental battle and when the stress is too much to bare, don’t deny yourself the grief. Give in to it. Feel the emotion of it. Let it wrap around you while you cry it out, yell it out, do whatever you need to do to constructively feel it. And then pick up the pieces and carry on.
Sounds easier than what it actually is. But it’s what we have to do, right? If not for ourselves, for the people who depend on us.
How do you cope with the trauma of your chronic illness?
Juliana McGrath says
Megan, this article is so insightful in your gentle way. Thanks for opening my eyes to your world…and for being so generous with your wonderful recipes. God bless xx
Marilee Greene says
You have been on a long journey. I’ve watch your Uncle Larry struggle and now Trevor. Your writings are so helpful. This was a wonderful piece and I’m passing it on to Larry and Trevor. Love you, Aunt Mar.
Thank you for sharing Megan. And your wonderful recipes! And pics of your beautiful girls. They always make me smile.
Finding you was a gift from God. So few understand the pain and the grief! I identify with you on almost EVERY point! And the epsom salt baths work wonders when I’m really stiff <3 But trusting the Lord to lead me and to make purpose from my pain- so that I can serve others well and have compassion! Wow, Such a big truth right there. I also schedule almost nothing and rarely even have the strength to go to church, though I am encouraged at the great improvements that I have had thanks to your recommendation of LDN!! It is pure delight to be able to serve my family so much more now.
Someday, you and I must sit over a cup of Kaladi and chat. (Haha- I do know how exhausting it is when people want to make plans!). Thank you for sharing. Keep on, girl!
Thank you for saying all the things that I didn’t know how to put into words. Just knowing other people understand and are going through a life they didn’t plan helps. Thank you. I am so very sorry you are going through so much, just know you aren’t alone.
Becky Bolin says
Long term suffering can make one feel so lonely. I’m thankful for your post it is so helpful to see we are not alone. After so many horrible health problems and a misdiagnosis of Celliac I am finally able to see joy again. My whole life changed and my faith in God grew. Feeling as though your health is spiraling out of control and there is nothing you can do about it is so scary. Our suffering is not a waste we can use it to help others. May God bless you and your family always!
Jodi S says
Glad you have found what works best for you. I know it’s been a long road. Love you and miss you!!
Patrice Davila says
A positive approach is so refreshing and so needed. Keep up the great work that you do!
Thank you for sharing,,,My own journey is so close to my heart and sometimes so difficult to bear. How very blessed I feel when I find a post like this one. I especially related to your comments about grieving. It’s a continuing adjustment.
Megan, this post is just simply awesome. You’ve put into words what a lot of people are feeling, and gave them some ideas on how to get through it. It ain’t easy, but no one ever said it would be. (((HUGS)))
Susan...in Texas says
I am so blessed, Megan, to read what you have written from your heart. I have been on the worst of this journey for twenty-three years. I seem to be in a recycling state of greif, and relate totally to everything you wrote in this commentary. Each one of us is unique, even in the challenges we face. With all the aspects of the symptoms and individual ways our bodies react to everything – stress, food, environment, relationships, thoughts, everyday demands on us, etc., becoming “overwhelmed” seems to be an understatement. My faith in God, and loving my family is what has kept me sane through this whole journey. Thank you for being you and daring to express the truth about your life and journey. It is clear that you “get” it! You are truly an inspiration and a blessing!
Ashley A says
Megan, i was actually wondering how you were diagnosed? Ive gone thru lupus blood test, lyme, full blood counts nothing shows up but i wake up every morning and can barely bend my knees or wrists. My drs think im crazy because im 27. Im gluten free and dairy free for two yrs. Any advice?
-Ashley from CT
It took 4 years for me to get a diagnosis. I saw 5 podiatrists, and 1 orthopedic surgeon. No one was able to help me. Finally, an allergist saw the itchy patch on the back of my head. I had been told by a dermatologist that it was eczema. The allergist said, “I’m not a skin specialist, but I definitely think that’s psoriasis, not eczema.” Long story short, she was right. I did a lot of research on my own after that, and came across something called psoriatic arthritis (which normally begins in the feet). I took my MRI’s, and x-rays into the same dermatologist who told me I had eczema and said, “Here’s the patch on my head, here’s my x-rays, here’s my MRI… I’ve had this swelling in my feet for 4 years. I don’t think I have eczema, I think I have psoriasis, and I think the swelling in my foot is psoriatic arthritis. What do you think?” She was speechless. When she finally did respond, she simply said, “I think it’s time to get you to a rheumatologist.” When I finally got in to see the rheumatologist, 10 minutes was all he needed to diagnose me. 10 minutes and he confirmed psoriatic arthritis.
It was a long frustrating journey, and I feel for anyone else having to go down the road of, “I have something, but no one can tell me what it is.” I’m so sorry, Ashley. Just keep being diligent. If a physician tells you it’s all in your head, run from them. Find someone else who will listen. If there are any rheumatologists in your area, try to get in to see one.
In the meantime, I’m sending you a big HUGE HUG!!! Hang in there! I hope you get your answers soon!
Melissa Jones says
Megan, your article really captured my attention. I could have written it, or words almost exactly like it, but my grief comes from the adoption of two traumatized children (who have proceeded to traumatize ME for the last 10 years!) I understand and agree with everything you have written, and find the advice to surround yourself with people who understand the most vital – at least in my case. I tried for years to talk to parents of ‘normal’ children about what I was going through, and received horrified stares and one report of suspected child abuse to OCS. That was NOT helpful, especially when we were struggling daily just to survive and heal two radically damaged children (under the guidance of a trauma therapist). So I ‘get it’ when you say to distance yourself from those who are not supportive. At any rate, I appreciated your article because it helped me view my struggles through the lens of someone who is suffering through something completely different — yet the emotional landscape is so startlingly similar. Keep up the good work, I love your website! -MJ, Eagle River
I have chronic illness, Type 2 diabetes, and know one understands the stress and emotional part that goes with it, It is traumatizing and very scary. When someone said a recycling of grief that describes me too. I also suffer back problems that stop me from exercising for the diabetes it’s a visious circle and gets me so down I have depression also from living this way and anxiety. I try to find the positive, but really is there such thing as a positive living with chronic illness, it is a constant adjustment, emotionally, phsyically, and most of all mentally exhausting. I am so glad I finally found an article on trauma and chronic illness, professionals don’t recognize that there is trauma with chronic illness I thank you from the bottom of my heart for writing this. Sandy