Guest Posts | Living with Chronic Illness

Lessons Learned from Chronic Illness by Mindful Shopper

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. 

 

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9 Lessons Learned from Chronic Illness by Guest Blogger Amy from Mindful Shopper. Chronic illness is a long and winding road, remember to treat yourself with kindness.

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.

The Lessons:

(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.

You can find Amy on her blog, on Facebook, on Twitter, on Pinterest, and on Bloglovin’.

About Amy:

Amy at Mindful Shopper shares 9 Lessons Learned from Chronic Illness. She encourages us to treat yourself with kindness and it's ok to ask for help.
Photo received from Amy at Mindful Shopper

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.
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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

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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? 

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39 Comments

  1. What a beautifully written guest post! 🙂 You did a great job Amy!! I love the style of your writing and how passionate you are. I definitely agree with you on so many of these points! Life itself can be challenging sometimes but we just have to learn to deal with it and to pick ourselves up. Thank you for the daily dose of inspiration!

  2. Hi, Amy –

    What a wonderful and inspiring post! I, too, have a chronic illness (also an immune disorder that causes dysautonomia). I have at times been housebound, though thankfully, I have found some effective treatments that have me functioning better now – nothing helps a lot but a lot of things help a little!

    I have a similar attitude as what you described here, and I appreciated your positive approach and honesty.

    Thank you for sharing your experiences here!

    Sue

    Live with CFS

    1. Hi Sue,

      I really appreciate your comment. I follow your wonderful blog and have been educated and inspired by it many times. Thank you for being a voice and for making a difference for those of us dealing with chronic illness! 🙂

    1. Hello Melissa,
      Yes, comparisons can be one of the most destructive behaviors for any of us- with or without chronic illness. We each of so much to offer the world. Thank you so much for taking the time to comment!
      – Amy Kathleen

  3. Oh wow Amy, she is truly inspiring. Definitely has us lazy people to get off our back side and appreciate all that we have. These are amazing and truly wonderful lessons that Amy has shared. Thank you

  4. Living with a chronic illness can be so hard to do. These are great ways to figure out how to live with a chronic illness. I have several friends with chronic illnesses and it is hard to watch them go thru the pain.

    1. I hope your friends find comfort from knowing they aren’t alone and there are people like Amy and I who understand too. Sounds like you are a good, empathetic friend to learn about what life is like for them. Thanks for stopping by Tammilee.

    2. Hi Tammilee,

      Thank you so much for commenting. Just the fact that you took the time to thoughtfully comment tells me that your friends are very lucky and that you are a blessing in their life! 🙂
      – Amy Kathleen

  5. Wow, I’m so sorry about your chronic illness, I can say I am very impressed with your ability to live with this day I. And day out and keep up with a blog and business. I hope that medicine will evolve to help you get back on your feet one day.

    1. Hello Heather,

      Thank you so much for commenting. I really appreciate your kind words. I am very lucky to have been diagnosed with these medical issues at this time rather than years earlier. There are definitely advancements being made in medicine and I think someday there will be a treatment option for me. My mother and father both have autoimmune diseases and my mother was diagnosed with hers many years ago when there really wasn’t any understanding of autoimmune disease.

      Thank you again for stopping by and commenting!
      – Amy Kathleen

  6. I can’t even begin to imagine what life would be like with a chronic illness, but I give kudos to Amy for looking at life with the “glass half full approach”. Her view point and stance on life inspires me to live a little more and to really aspire to achieve my goals.

    1. Amy is amazing. I’m glad she has inspired you as she inspired me when she shared her story with me. Thanks for stopping by and supporting Amy!

  7. I see so many people give up and have a pity party when life doesn’t turn out the way they wanted, myself included. I don’t have daily pain like you but I’ve let circumstances keep me from living life. You have really opened my eyes to how thankful I should be and how I should start applying what yove shared.

    1. Hi Tami,
      Thank you so much for commenting. I really believe that each of us has a story and our own struggles- no one person’s struggle is more important the another. I can tell from your blog that you are a kind and thoughtful person. Just keep being yourself and appreciating who you are!
      Hugs,
      – Amy Kathleen

  8. What a wonderful, inspiring and great post. This post is so important for many reasons, so thank you for sharing your story. I don’t think a lot of us who don’t live with chronic illness know what you go through, so it was very interesting to learn and read. This will help so many people, and educate us too!

  9. Thank you for a wonderful post that brightened my day! I have a long term chronic disease and the best piece of advice? Patience and just be me! If people don’t want to understand or don’t have the capacity to understand, it is THEIR problem and not mine!

    1. Hi Joanne,
      Great advice! Patience is so important but can be so difficult at times. The days often go by slowly especially if there is any feeling of isolation. I am sorry to hear that you also deal with chronic disease. I really appreciate you commenting and sharing a bit about yourself. Hugs to you!
      – Amy Kathleen

  10. Thank you for sharing something so deeply personal. All of your points are so true. I love your story because it reveals the true nature of your character – to see how you handle something so challenging which would force others to become callous. Your site is lovely and uplifting – as it appears you are 🙂

  11. I’ve had chronic illnesses all my life, and I agree that it can be isolating. People don’t understand illnesses that they can’t see, so even though I say I’m in pain, what their eyes see is someone who “looks fine.” My husband is very supporting; he knows that I don’t ask for help or say I’m in pain unless I really do, and am.

    I love hearing from people like Amy and yourself who don’t let their illness define them, who can stay positive but admit that some days just plain suck. Very glad to have found this through your link up today.

    1. Hello Stephanie,
      I am so glad to hear that your husband is supportive. Mine is as well. We are both very blessed! I am sorry to hear that you have dealt with illness for many years. I very much agree with your comment about illnesses that are not clearly apparent to others. These are often the toughest illness to find support and understanding. I want everyone to know that there is support and understanding out there. Hugs to you!
      – Amy Kathleen

  12. This was such a touching post, thank you so much for sharing your personal story with chronic illness! I think a lot of what you said could be applied to so many life situations. For example, we moved across the country (away from my entire family) last year and I am now raising three kids without any family support and a husband that travels very often. While I could be negative and depressed about my situation, I have chosen to seek out the positive, be grateful for the things I do have and make the most of my life the best I can. Thank you again for sharing <3

    1. Hi Heather,
      You are so right! I really believe that many of us are dealing with difficult situations. Your situation sounds challenging. I bet it is difficult and at times isolating. I am so glad though, to hear that you are finding ways to see the good around you. You sound like a wonderful gal and Mother!
      – Amy Kathleen

  13. WOW!! This is exactly what I have been learning from experience over the last few yrs. This guest post was such a nice reminder of that! Thank you both 😀

    1. Hi Liz,

      Thank you so much for commenting. I am sorry that you are also dealing with a chronic illness. Looks like you are also a blogger. We need to stick together! 🙂 Heading on over to check out your blog now! Hugs to you!
      – Amy Kathleen

  14. Thank you, Amy! You share so many important ideas–9 of them at least!–and you express them so well and compassionately. I was especially moved by your words about finding purpose, especially in the “small things that matter most,” and by your acceptance and understanding of people in your orbit who can’t fully empathize. Sometimes people’s genuine caring is gift enough, even without perfect understanding of what someone’s true experience is like. I know I will come back and read your points again and again, because they are a booster for living with chronic illness and just for living! Thanks, Tanya, for sharing Amy’s perspective with your readers!

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