Welcome to Another Edition of Be Our Guest Fridays!
Be Our Guest Fridays is a weekly feature where I feature guest posts by my favorite bloggers and authors. Each of these people has impacted my life in some way over the past few years. I like to bring your attention to them so you can see for yourself just how wonderful they are.
Today, I have Amy from Mindful Shopper as my guest blogger. Amy’s blog always has great gift ideas and I came to learn she suffered from chronic illnesses that left her homebound. You’d never guess her health issues from the beautiful and joyful she puts together.
Lessons Learned From Chronic Illness
By Amy from Mindful Shopper
I have been homebound due to chronic autoimmune disease for the last four years. The isolation and loss of identity that are often a part of chronic illness have been daunting at times and have led me to ask myself, “How do I make sense of a life with chronic illness?” It surely is not the life I had planned for myself.
Illness has forced me to restructure every facet of living. This, in turn, has led me to view life through completely new lenses. As difficult as this process has been, I’ve learned a lot about the innate human capacity to deal with hardship. It is my hope that others may gain some benefit from the lessons I’ve learned from chronic illness.
(1) Life Isn’t Fair Sometimes
It’s okay to cringe at this cliché. When I was a child and upset about not getting something trivial or things not going my way, my Dad would sometimes say this to me. It drove me crazy. I knew he was right but I just didn’t want to hear it. I understand the knee-jerk negativity this saying may evoke. However, to begin the process of learning to manage my chronic illness, I needed to fully digest this lesson. The crummy and mucky glass of life becomes easier to see through once you learn to accept this reality.
(2) Things Don’t Always Turn Out As Expected
I’m really starting things off on a positive note, huh? Sorry, we’ll get to the uplifting stuff soon. I promise. Expectations are a natural part of living. We have them for ourselves, for others, and others have expectations of us. We dream of how our life will be. Part of living with chronic illness is learning to restructure your expectations and dreams. This doesn’t mean you give up on them; you just figure out ways to work through and around your chronic illness to create new ones.
(3) Your Illness Does Not Define You
I am not my illness. Neither are you. Our value is not measured by how clever, pretty, funny, energetic, or healthy we are. We each have value by just being who we are; by existing. The world is a better place with us in it because we all have something to offer despite our health.
(4) You Can Still Find Purpose
This lesson has been the hardest for me to accept. It can be extremely difficult to feel purposeful when you have a chronic illness and your big achievement for the day may be just summoning sufficient energy to climb out of bed in the morning. I have learned to appreciate the small things; the ability to cuddle with my cat, to listen to my favorite music, to lay next to my husband and talk about our day. In the “end”, it really is these small things that will matter most- not how much money you made, how many awards you won, or the number on the scale. When you have a chronic illness, it is important to rethink what it means to be purposeful.
(5) Quit Comparing Yourself To Others
Oh, this is a big one! It can be difficult at times to digest stories of others living their full and vibrant lives without feeling sad, wishing that your life was as interesting or exciting as theirs. STOP IT! It is important to understand that we can never really know what struggles others feel by just looking at a Facebook post. No one, despite appearances, gets a free pass in life. Most are fighting their own hard battles, struggling to stay happy and positive. Comparing yourself to others is a waste of time and will yield nothing positive.
(6) Chronic Illness Can Be Isolating
Chronic illness often results in some degree of isolation. Finding ways to connect with others on some level is critical. My husband and I have discovered that Facebook support groups can be extremely helpful. There are support groups for every conceivable illness. If you are spiritual person, participating in faith-based groups can also be very helpful.
(7) Not Everyone Will “Get It”
This doesn’t mean that they don’t love and care about you. Chronic illnesses themselves are highly complex from a medical standpoint, and are very difficult for non-medical (and sometimes medical) individuals to understand. Learning to better communicate the impact of your illness and your needs is a must when you have a chronic illness, and is something I am still working on mastering.
There are many resources out there to assist you in helping others understand your situation. Consider sharing this helpful booklet with loved ones: “But You LOOK Good: How to Encourage and Understand People Living with Illness and Pain” by Wayne and Sherri Connell. Also, here is a very good online article illustrating how difficult it can be for those with chronic illness to manage fatigue: “The Spoon Theory” by Christine Miserandino.
(8) It’s Ok To Have Bad Days
Some days are just “bad”, filled with flaring of symptoms and/or sour moods. I have learned to let those bad days “be” rather than feeling frustrated over not being able to “get out of the funk.” Most days I can keep a pretty decent attitude, and accomplish this by surrounding myself with positive thoughts, making the effort to see the good things around me, and taking time each day to find something to be grateful about. It also helps to begin the day with an inspirational reading, perhaps some basic breathing exercises, and/or basic stretching if possible.
(9) Be Your Own Best Friend
Take care of yourself. Don’t be embarrassed or afraid to ask for support. Dealing with a chronic illness can be very frustrating. The “good mood” chemicals in your body can become depleted when you have a chronic illness. Seek support from a specialist in mental health if you are dealing with depression and/or anxiety. Rest when you need to rest. Learn how to pace yourself to avoid hitting the wall of fatigue. Treat yourself with kindness. Love yourself.
Up until the last few years and despite being diagnosed with Autoimmune Ovarian Failure and an Autoimmune Connective Tissue Disease, Amy Stenehjem-Kelsch was an active person. She was a busy physician, avid exerciser, and would never shy away from a “Carpe Diem” moment. She specialized in an area of medicine called Physical Medicine and Rehabilitation, a specialty focusing on helping patients manage and adapt to their chronic medical conditions.
Although Amy and her husband Chad had a lifetime full of plans and goals, their lives took an unexpected turn in 2011 when Amy became ill with a rare autoimmune disease called a Periodic Fever Syndrome (PFS). This disease caused damage to the part of her neurological system that controls all of the automatic functions of her body (heart rate, breathing, blood circulation, body temperature, bowel/bladder control, and blood pressure). This damage resulted in an illness called Dysautonomia which has left Amy home-bound (often bed-bound) since May of 2011.
Despite this significant challenge, Amy started a company, Mindful Designs, and a blog called The Mindful Shopper. She uses her blog as a place to share fun and unique products in hope of making the life of her readers easier, brighter, and happier. She has found purpose and joy in being able to connect with others through blogging.
Didn’t I tell you Amy was inspiring with her amazing attitude despite all the health issues she endures? Remaining positive and strong all the time is hard and downright impossible. I go through a grieving process probably once a month when my RA flares and I wonder why I can’t be a “normal” mom who can be active and playful with their kids. The pity party comes and goes with my hormones and pain levels.
I agree with Amy that life with chronic illness can be isolating. I’ll be honest, I tend to hide my true fears and feelings about my RA from my family and friends out of fear that they will treat me differently or be scared. Over the past couple years, I have gotten to know quite a few bloggers who face chronic illness, some having been featured as my guests. It’s nice to know we aren’t alone and someone understands. Lisa from Books in the Burbs was recently my guest and shared the importance of Self Care and Letting Toxic People Go. Her post got such a great response, we decided to start a Facebook group where bloggers with chronic illness can support one another. You don’t have to blog about your chronic illness but it’s just a vehicle to listen, encourage and help one another through our good days and bad. If you’d like to join our Bloggers with Chronic Illness Facebook group, let me know.
How have you learned to cope with your chronic illness? What means of support do you seek out? Have you heard of the Spoon Theory?