10 Things I’ve learned about living with invisible illness

I have been living with invisible illness {diagnosed} since 2008.  Chronic pain, fatigue and bizarre symptoms are part of my everyday life.  Statistics tell us that 1 out of every 2 Americans lives with a chronic illness {diabetes, lupus, fibromyalgia, rheumatoid arthritis, multiple sclerosis, etc.}   I know I am not alone.  So, why do I often feel that way?

1.  Invisible illness is isolating. Let’s face it, people get tired of hearing about your “aches and pains”, tired of having you cancel at the last minute because you suddenly feel like you’ve been hit by a truck, etc.  At least, I think they get tired of it so I withdraw, not wanting to be a bother.  Loneliness is a frequent companion.

2.  Invisible illness is unpredictable. I can go to bed feeling fine and wake up, unable to get out of the same bed.  For a Type A planning person like me, this is the bane of my existence.

3.  Invisible illness makes you stronger.  I have found an inner strength I didn’t know I possessed.  The strength to keep going no matter how tired, the strength to be there for my kids regardless of how I feel, the strength to invest energy I don’t have in my marriage, the strength to be myself and to love who I am.  I know that God allowed this in my life for a reason and the strength that I possess comes from Him directly.  This doesn’t mean I am always strong!  Please understand that.  But the bad days are bearable because I know {that I know that I know} this is just my earthly circumstance.

4.  Invisible illness is not your fault.  For the longest time, I searched for the reason for my illness{es}.  Was I eating the wrong thing?  Handling stress the wrong way?  Exposed to toxins?  Don’t get me wrong, those are all important things but NOTHING I did {or you have done} or didn’t do, made me sick.  We live in a fallen world where illness and pain abound.  However, how I handle my illness is up to me.

5.  When dealing with invisible illness, you will find {and need} your faith.  There are studies that show that prayer and a strong spiritual foundation aid in healing and psycho-social well being.  My journey with MS, lupus {and the related blood clotting disorder that almost took my life}has brought me closer to God than I ever knew possible.  In this way, I consider my illness a gift.  The vulnerability and desperation brought on by being sick has made me more dependent on my Heavenly Father and I will never wish that had not taken place.

6.  Invisible illness affects everyone, not just the “sick” one.  Marriage, parenting, friendships, sibling relationships, work, church- my illness is a part of my life so it impacts everyone in my life.  Being aware of this helps insure that I keep others feelings and needs in mind and not give in to the temptation to become self focused.

7.  Invisible illness does not have to define you. I am a daughter of the Most High King, a mama to four, Mimi to one little Sweet Pea, wife to an amazing man, lover of words, student of The Word, friend, sister, auntie, teacher, speaker, coffee guzzler, teen mom advocate who happens to live with chronic illness.  God designed me to be me and nothing, including invisible illness, will take that ability from me.

8.  When you have invisible illness, you need a doctor that is invested in you.  So many physicians are motivated by money rather than patient care.  We all deserve a doctor that pays attention and genuinely cares about positive outcomes.  Look until you find the right fit for you- it can literally be a life and death decision.  I have been so blessed with the physicians I have found.  {I joke that I have an “ologist” for every body part and then some}  One of the reasons I am happy with my medical team is because I have not hesitated to move on when I have come across a doctor that did not take my opinions, questions or suggestions seriously.

9.  The internet is a lifeline when you live with invisible illness.  I discovered blogging quite by accident back in 2008.  A few months after I was diagnosed with MS, I was looking for information and came across several blogs that were informative.  Then, I discovered Twitter, started blogging on my own and connected with other like minded women.  My life has been richly blessed by my friends that live in the computer {many of whom I have met in real life and love dearly}.  I am eternally grateful for the ability to connect with a friend, anytime, anywhere.  The value of that connection is priceless when you are laid up in bed for weeks at a time.

10.  Invisible illness will make you regret it if you push yourself too far.  Oh, how hard this lesson has been for me to learn.  When I do too much, push through when I shouldn’t, ignore the warning signs of a flare..I regret it.  Rest, hydration, not doing too much- these are all necessary for me to maintain my health.  I suffer and my family suffers if I push past my limits {but I do anyway because I am one stubborn woman}.

This week {September 12-18, 2011} is Invisible Illness Awareness Week. I will be writing more about this topic this week.

Do you know someone that lives with an invisible illness?  Do you live with one?  I would love to pray for you {or your friend}.  Please leave a comment with your first name and the illness you live with and I would be honored to lift you up to our Healer.

This post is linked to Top Ten Tuesday at Oh Amanda.

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  1. Prayers for you and for all who suffer with invisible illnesses.

  2. Melissa, all ten were spot on. Thank you for writing this post. We met briefly at She Speaks 09. My name is Deb and I have myasthenia gravis. Thank you for praying.

  3. This is a great list I need to keep close at hand. My invisible illness has not yet been identified and it is very frustrating to say the least. Thanks for sharing!

  4. Thank you for sharing this.  I have a few people in my life who are struggling with these things and I appreciate your insight.  I am thankful that your faith has been strengthened by your battle with invisible illness.

  5. Thank you so uch for your blog and heartfelt reflections! Beautiful and appreciated. If you’d like, please consider submitting an article to e at restministries.com – I’d love to see more of your writings!

  6. Deneise Hess says:

    Hi Melissa this is Deneise Hess the woman that my blessed grand daughter and new daughter Brittney and Deseree lived with.  I love being her Na-Na and I thank you for all you have done and continue to do fore them.  But anyway I live with chronic back pain and artrritis.  Your post was so right on the mark.  I tried not to complain and have stopped taking alot of my pain meds for fear of addiction although my doctor said I would be on them the rest of my life.  My family doesn’t understand my illness or my pain so I say very little.  I pray every night for everyone but myself and would greatly appreciate your prayers,  I wish I had the great doctors you do.  Again thank you again for all that you do,

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