Starting A Family With A Chronic Illness

As I bent down to hug my Grandma Rachel goodbye, she pulled me close to her and whispered in my ear, “You will be a great mother. When the time comes you will be able to do it. Never let fear hold you back from being a mom.”

It’s hard to know where to begin with this topic. Those close to me have known how much this has weighed on my heart and spirit since being diagnosed with Fibromyalgia. This will probably be one of my more vulnerable posts, and my goal is to be raw and real with you.

I’ve always dreamed of having kids. I pictured that 3-5 years after marriage I would be ready to welcome a little one into our home. I would be a great wife and a natural as a mother. As many of you know, in late 2015 I got sick with Fibromyalgia. My family and friends assured me at the time that this was just a phase. I was young and my body would surely bounce back. Maybe it will, but as of today it has not. It can be hard to describe to others what this looks like on a daily basis, but I will try my best.

Here is a list of my current symptoms:

  • Nerve pain
  • Muscle pain
  • Insomnia
  • Rashes
  • Feeling like my legs are being pulled away from my body
  • Sleep Apnea(A sleep study concluded I am disturbed/wake up 10 times an hour)
  • Feeling like ants are crawling on my body
  • Sensitivity to light, sound, and touch
  • Dry eyes
  • Chronic fatigue
  • Muscle weakness

Since this journey started one word has brought instant anxiety: kids. What once felt like a given, now felt obviously questionable. How could I possibly be a mother with this condition? How could I have a child if I don’t have the muscle strength to hold my Godson for 5 minutes? How could I care for a baby when lack of sleep flares all of my symptoms, making it virtually impossible to keep up with basic needs of a child?

In May of 2017, I suffered a very early term miscarriage. In fact, some might refer to it as a “chemical pregnancy”. This only added to my guilt because I felt that I shouldn’t be as upset as I was. It seemed silly to be so hurt over something I barely had. Although even if it didn’t make sense, this loss triggered all of my feelings and fears that being a mother was not in the cards for me. My body was broken, or at least that is how I felt.

Shortly after this, I had a dream that I had given birth to a beautiful baby girl named “Olive”. I often feel like God speaks to me through dreams and when I woke up I instantly felt like this dream was important. I looked up what the name Olive meant, because it was not a name I had ever considered for a child. Olive means “Symbol of Peace.” In the midst of my chaos, pain, and grieving, I had given birth to a “symbol of peace.” I held this dream close to my heart. I still do.

Fast forward to a couple months ago, I went to go visit my cousin Josh and his new baby son, Asa. I loved spending time with Asa and I found I could hold him longer than I thought I would be able to. Unfortunately towards the end of my trip my body began to flare. It hurt to hold him. It hurt to move my arms. It felt like someone was stabbing me in various places in my body. I was overcome with those negative thoughts once more.

“You will never be a mom.”

“If you can’t babysit, there is no way you could have a child of your own.”

As I left for my trip back to Atlanta, my Grandma Rachel, a chronic pain fighter herself, whispered those sweet words to me.

“You will be a great mother. When the time comes you will be able to do it. Never let fear hold you back from being a mom.”

I wish I could find the words that could explain just how much this meant to me, but it feels indescribable. My response was a very tearful,  “Thank you so much Grandma.”

I still have moments of being overwhelmed; moments where it feels like being a mom would be harder than climbing Mount Everest, but I feel hope. Family has been key in pulling me out of my doubt. Wise words from my precious Grandma. Encouraging talks with my cousins. My mother assuring me that God has plan.  In fact, every family member has spoken to my fear and gone out of their way to encourage me, but of course the most life giving words have been spoken by my dear husband. My husband, who tells me that this is not my forever. My soulmate, who tells me that if I happen to stay sick, we will make it work. We will be parents, and most importantly, if for whatever reason we never have kids, he would love and support me either way. I am enough for him.

Their kind words of love wash over me. They keep my heart thriving. They keep me thankful. Most importantly, they keep me filled with hope. Hopeful that one day my dream of Olive will become a reality.

53 Comments

  1. So brave to tell your story in this way. There is help for you, I know it because I’ve had some of the same symptoms as you, though my sleep study showed arousals that were not apnea related. Recently I learned that my allergy medicine caused many symptoms like insomnia, anxiety, dark thoughts, and I’ve begun to feel better in many ways since stopping the Singulair, but now the allergy symptoms are returning and I’ll look for non-drug ways to combat fatigue and congestion.

    I’m eating better, washing all fruits and vegetables in a solution of baking soda before eating them. I hope your other followers will provide some ideas and stories for the pain you’re experiencing. I’ve not encountered that. All the Best, thanks for the very positive thoughts shared.

  2. I have no words for what you’re going through. I do trust that God always has a plan but that can be hard to see when you’re walking through situations. Praying for you and a baby Olive in your life 💕

  3. Wonderful to read! It is tough to think of the many life experiences that will be so much more difficult while struggling with fibro. I also doubt myself sometimes when I try to imagine myself in the future.

  4. This is so beautiful, and such wise last words from your grandma. It speaks to me too, so thank you to you both. One day you will be a great mum ❤️

  5. Beautiful post, I really enjoyed reading it. Miscarriage is more common that you think and a loss is a loss at whatever stage. Loss is hard. I lost one too pretty early on and it was hard. I think I’ll always wonder what that life would have been like, who that child was etc. Your support network sounds wonderful, keep your chin up and take care of yourself. Hopefully one day your dream will come true xxx

  6. No matter what happens God has got you girl! I feel like He speaks to me in dreams too and you have to hold onto that feeling and not let fear and doubt creep in. Thank you for sharing! Like all of your posts this was so well written and beautiful!

  7. great post, thank you for such an honest share. You are a courageous woman, and whatever you decide to do will be the right thing for you. You are an amazing young lady.

  8. Wow, what a tender, beautiful post. Being a Mom is a wonderful thing. And just so you know, navigating parenthood with chronic illness is difficult, but more manageable than you might think. My husband has an immune system disorder that causes him chronic pain and he’s a pretty active daddy. I hope that encourages you. I’m going to say a prayer for you RIGHT NOW lady! 🙂

  9. When my second son was born, I started to have significant health issues. I had natural childbirth and my already elevated pain centers made this very difficult. I had hormonal headaches -migraines, low blood sugar, crazy metabolism losing too much weight which I never had before. Years of pain and finally diagnosed with chronic Fatuque syndrome . My Epstein Barr virus titer was 1-1000. And fibromyalgia But I would make the choice to have children again. Because through it all God carried me. My husband was patient if I only magaged a super of Mac and cheese from a box and a house not in order. I had to choose where to put my energy. I was able to be home room volunteer mom, I was able to read books and snuggle in bed with the kids. I put love notes in their lunch boxes. I had bad days of being too loud and too impatient but I found that “love covers a multitude of sins!!” They were the joy of my life. Being a mom was most important job I’ve ever had.
    Now- 38 and 36- My two sons love God. They love people. They change peoples lives for the better through Ministry and their jobs. And dispite my weaknesses and sicknesses as a mom, they love and apppreciate me so much. They have been such a joy! You have a great loving husband. You should not be afraid to have children.

    However, I will add this recommendation that most young moms may not like to hear- Do not have 100% total natural childbirth. Get medicine- I didn’t and it was my biggest mistake. People who don’t have fibromyalgia don’t understand. The extra pain on top of our regular pain can feel traumatic if you take nothing. Millions of babies have been born to moms who took pain relief. They will be OK. Nursing the baby is really helpful – so do try to nurse some -but- natural childbirth is not a great option for ones like us. I agree with your grandmother – don’t be afraid. You and Tim will be such great parents. And maybe you could find people to help you.

  10. This was a truly touching post. I can only imagine what chronic illness must feel like, and what it does to one’s dreams. You do seem to have a really strong and loving family, though, as others have pointed out, too. And a truly supportive husband. From the sounds of it, if anybody can make it work then it’s the two of you together. Good luck on your journey!

  11. Oh how I loved your post today! When living with chronic pain, it helps to have a supportive spouse. And you’ve got that! After my decompression due to Chiari – in 2013, doctors said I wouldn’t be able to have another baby. I searched for the best high risk OB to deliver my 4th baby and with the Lord’s help, I found him. I had 3 babies before decompression and 3 after. Yes, doctors are a HUGE help but God is an even bigger help, put your trust in God and His will be done. ‘Don’t stop dreaming and don’t let fear hold you back!’ Yes! 🙌🏽 I live with chronic pain every single day and am a stay at home mom, it is doable, it is manageable, it is bc I believe He is with me every second of my days. 😊🧡

  12. I hope your dream comes true (Olive is such a cute name! I always wanted to call my baby Oliver if I ever had a kid and had a boy haha) – because I know you would rock at being a mum! You are already so inspiring. Despite your illness look at all you already do! You have a job, you get out and about, you always seem to be smiling. You’ve definately got the strength even though sometimes your body doesn’t. My mother in law is a chronic pain sufferer and I know it must be so hard on you – lucky you sound like you have an amazing amount of support. (How cute is your grandma by the way! Haha)
    But your husband is right if you guys decide not to, or can’t for any reason, have kids. You are awesome. Remember that 😊

    1. You made me cry 😭 Thank you so much. You have no idea how much that means to me, you made my night. I do have a lot to be thankful for, including encouraging people like you ❤️❤️

  13. Very inspirational post, I also like to think that God send me stages through my dreams too. I am so glad that you have found your peace and happy ever after. Stay strong and continue to share your amazing message.

  14. This post is incredibly relatable, but honestly very inspiring. The support and love your family has shown you is absolutely beautiful. I, too, want to be a mother some day and struggle with fibro. While I don’t have a husband (or any prospects for that matter haha), it’s something I very much want to do someday. And I believe with the love and support of family, it is most definitely possible. And with science ever-evolving, who knows. We may not have to fight fibro forever!

  15. Hang onto your grandma’s wise and very sweet words! There is power in a positive message from someone who cares for us deeply. I know from personal experience that you can be a mom, and a great one although you face chronic illness. I was diagnosed with fibromyalgia in my early twenties. We had three little baby girls to raise, I was fortunate to also have a supportive husband. Leaning on God and trusting that He has a plan has helped me, He knows and understands your pain and your dreams. Keep dreaming and hoping and praying. Looking forward to the day when we all live free of pain!

  16. I believe and know chronic illness will not stop you from being a mother someday. I was diagnosed at 21 with Rheumatoid Arthritis, and later with Lupus. For a very long time, I thought I would never get to be a mom. At age 40, I finally had my baby girl! I’m doing great, and so is she.

  17. This is such a beautiful post, there is no other way to describe it! Although I cant begin to understand how you feel everyday, I’m so sure your dream will come true one day and though there will be struggles, you will deal with it and make the best of it! You will be a fab mom!

  18. Thank you for sharing your story and your hopes for the future. I empathize with your story and the pain you have to endure day in and day out since I been living with chronic illness for most of my life. Unlike you , my symptoms became debilitating after I gave birth to my second child at age 24 . Now my son is 17 . Can’t say that has been easy being a full time mom and dealing with demands of motherhood but on the other hand many times have been my kids that have got me up and going when I thought I could not go on. My kids have not missed anything and they have happy childhood memories and they are the most kind , loving compassionate children. I have been blessed also to have a loving and supporting husband too .We have worked as a team in raising our children. He has been a great dad and loving and patient husband through my flare ups. This is what real love is all about, in sickness and in health. On another note I have not allowed my chronic illness to make me a bitter person. No matter how bad the day may be I chose to concentrate on the blessings in my life. You are blessed to have a supportive family. It is very helpful too that you chose to don’t isolate yourself but share your experience with others .Keep up the positive attitude and shoot for the stars.

  19. Hey thanks for this post, I don’t have fibromyalgia I have pudendal neuralgia bu going through similar feelings as you and it’s nice to know I’m not alone when all my friends are having there baby’s around me 🙂

  20. Thank you for writing this. Being a Mother is always something I’ve wanted to be. I have ME/CFS and have for ten years and this is my biggest ethical dilemma I face. I have some time thankfully as I’m in my twenties.

  21. I don’t know if you have ever heard of the Specific Carbohydrate Diet but I have seen a lot of people get pregnant while treating gut issues. This diet treats inflammation. I know yours is not particularly gut, but all things run through the gut and are spread through the body. If you do it without cheating , you will find a lot of healing. I did it and I am well. No meds. I use tumeric for any arthritis issues. Google SDC diet,

  22. Thinking of you and praying for you. I know this wasn’t easy to share. My prayer is that one day you’ll have that dream come true.

    1. Thank you so much Tayler! I appreciate your prayers more than you know ❤️

  23. This is such a beautiful post. My son was just 2years old when I was diagnosed with my autoimmune disease. At first, I thought I would not live to see his next birthday. But I’m still here and he is now 21 years old. Mu advice to you is to build a strong support system. Read the blogs of fellow spoonies for simple tips to manage your life and home if you live with chronic pain. God has a plan and He will give you the strength you need to cope with being a mum when the time comes and it will surely come. It’s just a matter of time. I will keep you in my daily prayers.

    1. Your prayers mean more to me than you know Poovanesh. That is the one thing that has always encouraged me: God will give me the strength I need when the time comes. Thank you for reminding me and encouraging me!

  24. You are such a strong woman. When the time is right I believe you will become a mommy. Although I can’t speak to the pain you feel due to your condition, I too have a very sore body after holding someone else’s baby. Your baby will be born small and your body will slowly build up the strength so that your body won’t hurt like it would after holding someone else’s. You got this. Your support system will be their for you! Much love sent your way and baby vibes too. 🤗

    1. Thank you for your kind words Jenna, truly. I had never thought about the fact that I will probably build strength as time goes on, that is so encouraging. I hope you have a wonderful day!

    1. Thank you Luci! Everyone has been so wonderful, I am thankful for all of the support:)

  25. I suppose every word has been said. It is indeed a raw honest emotional post and it choked me up but my question to you would be: why not, why could you not have babies. Lisa can confirm that as she is a real life example who has done and managed it. You are just not going to be managing it in the same way as other mums. You may have to listen to your body and work with your symptoms. Your child won’t know that. You still have the same love for him or her. I have a friend who is in a wheel chair and he can’t pick up his child and still they had one. If you want it, you can do it. Good luck and let your feelings do the talking!

    1. Thank you so much Marijke! The pain and muscle weakness will make it difficult to do everyday tasks with a baby, but I will find a way! I know it won’t be easy, but I am feeling more hopeful every day:)

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