What is it like to be married to someone with a chronic illness?

Before I excite you about how awesome it is for my husband to be married to someone with a chronic illness, let me paint a lovely (insert sarcastic voice) picture for you…

Freshly engaged, with marriage on the horizon, I wanted to revisit my old diagnosis, and check with a doctor about pregnancy. “Autoimmune diseases usually suppress themselves with pregnancy, and since you are supposed to be in remission, you should be fine”, my neurologist said.

Little did we know that my body wasn’t necessarily in remission (story for another time), and that I would go into a physical flare after my first pregnancy, and even worse, a physical crisis after my second. Back-to-back pregnancies were detrimental for my body. A year into the life of our first child, I knew the physical struggles I was experiencing were more than just sleep deprivation. In the months following our second child’s birth, my physical struggles began to take over. The weight on my already thin body started to fall off. I dropped from a healthy 120lbs (pre-children) down to 95lbs. My hair started to fall out in clumps, “chemotherapy size clumps”, as one doctor described it. I could see a heart beat in my stomach, and I could barely get off the sofa without having black spells.

I was seriously winded all of the time, and just getting both children dressed was enough for me to lay right back down. Getting our children to the corner store for milk, became my biggest outing. During this time, my children never saw the inside of Target with me, nor did I take them to parks and playgrounds like many other children their age. It was too much. Some friends scoffed at my situation, “oh, you just can’t mentally handle taking your children to Target”. But I was too fatigued to lift my arms without feeling like I was carrying cement-filled buckets. Somehow, my frail 95lbs felt like a 2-ton elephant on tranquilizers. And somehow through all of this, I was supposed to keep our family afloat, as many stay-at-home mothers do.

Looking back at this period. This was an awful introduction to motherhood for myself, fatherhood for my husband, and parenthood for us. I cannot help but think about what this phase was like for my partner. The main question through all of this, was…what is it like to be married to someone with a chronic illness?

And with that, I decided to interview my husband.

Q: What it is like to be a married to someone with a chronic illness?


Q: How so?

Invisible chronic illnesses are tough to understand. You have to exert a ton of patience, and you have to learn to become more understanding, and empathetic towards someone who looks normal and healthy on the outside, but doesn’t feel physically normal and healthy on the inside. I didn’t understand why you weren’t okay with me being gone long days at work, or why you wanted me to stay home on the weekends.

Q: What is it like to co-parent with someone with a chronic illness?

Just as challenging.

Q: How so?

Because you have to constantly think about how you can make your partners life easier, which puts more of a physical workload on me. I often try to cut workdays short and sacrifice plans outside of the home.

Q: How did you feel when your wife’s condition was at its worst, and when she was bed-bound at times?


Q: How so?

Frustrated because I did not understand why you could not get out of bed, you looked so normal on the outside, I couldn’t understand how this could be a physical issue. I was also scared.

Q: Why were you scared?

I was scared because I didn’t know a whole lot about your condition, and I didn’t know if you were going to get better or worse because at the time, treatment was not working.

Q: Why didn’t you know a lot about her condition?

Because I was in denial and didn’t want to research things.

Q: How do you support your wife now?

Whatever you need. I often try to think ahead, and opt to put a lot of the physical burdens of parenting on my shoulders.

Q: How so?

I come home from work early, and I try to work from home. I also take our children to do activities like hiking, biking and swimming. Since many of these activities make you extra tired, so I try to do these by myself with the children, so that you can stay home and rest, or do chores at home while we are out. I also cook dinners, and clean the kitchen after many of our meals.

Q: Do you wish things were different?

Never thought about it.

Q: Why?

Because things are the way they are. I may not have envisioned this would be our life, but this is the life we have.

Q: What is some advice that you would give to someone’s spouse or partner who is dealing with a similar situation as you?

Take lots of deep breaths. Research and educate yourself about the disease or condition. Speak to a professional. Seek therapy as a couple as well. Communicate with your partner about your concerns, and your needs too.

Q: What would you do differently (when your wife was at her worst), if you knew what you knew now?

I brushed things off in the beginning, I closed off emotionally, and my frustration made things worse. I would have done more research to understand the details of your condition in the beginning, and I would have seen a professional sooner.

Q: What made you see things differently?

Having my own recent health issues has opened up my point of view.

Q: Would you be open to using this topic for my next blog post? “Daddy Isn’t Feeling Well?”

Perhaps…yes, perhaps!



Maxed Out After Having Children

Did having children set your chronic condition, or illness over the edge, and into a flare?

I spoke to a fellow mommy recently, who also isn’t feeling well, and we both had this same feeling…we knew our physical limitations before children. But it wasn’t until AFTER children, that we physically maxed out.

In my twenties, and before children, I knew full well that I was battling physical limitations. But since my disease was supposed to be in remission, I powered through severe bouts of fatigue, black outs, double vision, headaches, an inability to hear well out of both ears, difficulty taking deep breaths, tremors, muscle weakness, digestive issues, and exercise intolerance.

However, in my twenties, I was only responsible for the physical implications of taking care of myself. I would go to work, mask my symptoms, and come home to rest on the couch. Go out with friends, mask my symptoms, and rest in bed until noon on the weekends. With no children to take care of, I always had room to rest when I pushed my body too far physically.

And then pregnancy came. My body handled things pretty well until I was put on bed rest. After I delivered my first child, boy was my body maxed out. By maxed out, I mean that I was physically pushed beyond what a normal and healthy mother could sustain. Not only was my delivery borderline what a medical malpractice suit would entail, but our firstborn had severe reflux, had to be fed with limited amounts of milk, was not comfortable laying down flat, and most of the time he had to be placed on a wedge to sleep. He also didn’t sleep more than two hours at a time until he was close to 12 months. Yes, you read this correctly. WE didn’t sleep more than two hour increments for almost a year, and it was pure torture. I was a complete disaster, and so nauseated when I woke up for the day, that I lost all of my pregnancy weight, roughly 55 lbs. within a month. My body was in a total systemic crisis.

It first became clear that I was struggling after having children, when I couldn’t put on my firstborns diaper, and  his clothes for the day, without getting winded. I couldn’t even brush my teeth without having to sit down and rest afterwards. When I saw other moms whisking their young children to Target, the zoo, and playgrounds, where I was barely getting my children dressed for the day, I knew something was inherently wrong with me.

By the time I started to understand my journey was not normal motherhood fatigue, and that I was going through a health crisis, we found out we were pregnant with our second child. Even though I knew I was not physically capable of managing one child, let alone two children, we moved forward with the pregnancy, and simply resorted to get help from a nanny.

Even with child care support, two children less than two years apart left my body taxed. I continued to lose weight, and when my hair started falling out in “chemo” clumps, it finally became clear, that something was really not right. It also became clear that back-to-back pregnancies and managing the day-to-day nuances of raising children had set my chronic illness into a flare. I was experiencing something more than just normal mommy hood fatigue….and it was apparent that even the strongest of coffee couldn’t cure my situation.

Did having children set your chronic condition, or illness over the edge, and into a flare?


Postpartum Blues

Since I have launched this website and blog, I have had many positive responses from other mothers, all who have been terribly grateful that they are not alone on this journey. Not surprising, many of the moms struggle with a myriad of chronic illnesses, such as rheumatoid arthritis, cystic fibrosis, endometriosis, postural orthostatic tachycardia syndrome, chronic fatigue and others. Can you imagine the compounding effects of running around with babies, toddlers and/or children while struggling to grasp your own breath – or having to rest, ice and massage your inflamed, stiff and very painful joints? I can. Because I have dealt with decades of chronic fatigue on a daily basis.

If you are reading this, I hope that you can relate in your own manner as well. Even if you do not suffer from a chronic illness, or an invisible condition, you most probably have been sick many times throughout your journey of motherhood. Now imagine waking up feeling flu-like symptoms 365 days of the year. This is what chronic fatigue has been compared to. Now imagine being a mother in a constant flu-like state, all while keeping up with the journey of not just motherhood, but with work, your friends and your family…this is unfortunately what it is like to be a mother who isn’t feeing well, dealing with a chronic illness. And this is exactly why I decided to launch this website and blog. So that other mothers who do not feel well, do not feel alone.

One particular area that has been asked of me several times since the launch, is if I am going to touch on mental health in the sense of *postpartum blues. While I did not personally experience this myself, I do have a personal interest in bringing this topic to light because unfortunately I have seen firsthand how postpartum blues are not well-supported, and how mental illnesses are just as shunned as invisible illnesses. I partly believe postpartum blues are not well-supported because most people do NOT understand HOW to help. In general, people with invisible illnesses, (physical and mental) are sometimes shunned because you cannot see the problem. People see you looking normal on the outside and expect you to snap out of it. But when it comes to a physical or mental illness, like postpartum blues, one cannot simply “snap out of it”.

Here is an example: After my second child, I was bedridden at times due to extreme fatigue, I even dropped below 100lbs due to a peak in my illness (at the time undiagnosed and untreated). When my husband, friends and family tried to continue to push fulfilling our lives with child-driven activities, social engagements, etc, I could barely keep up physically. My husband would be on his way out the door for a day of golf with his dad and I would be in bed, while our baby and toddler were in their rooms waiting for mommy to drag herself down the hallway. His dad would often wonder why I was’t snapping out of it, as if I could help how my body was dragging me down. My body was failing me so much, that sometimes I would put movies on repeat for hours at a time, while I laid on the couch trying to grasp enough energy to go from making them breakfast to lunch and then dinner. When all this was happening, my physical inabilities, (which were invisible to others), wore my husband down. It even wore down some of our friendships because we said no to a lot of engagements. This got to a point where some friends started to question if I was postpartum. Which actually would not have been a bad thing. But you know what, they asked my husband, and not me directly. And they asked rhetorically. Without much support and more of a shun.

Honestly looking back, even though my issue was physical and not mental, bottom line, I wish these friends or family would have acted beyond the whispers. What would have really helped if I was postpartum (or not), was if they engaged in actively “helping to offer support” instead of “whispering or shunning the issue”. If they would have directly asked me, “are you doing okay? and is there anything they could do to help?”. And then my suggestion would be even more, to then follow up with tangible supportive and suggestive actions. “Can I take your older child out of the house for bit, while you rest with the baby?” Or “can I deliver dinner one evening and help with bath time ?” These suggestions can only take a few minutes out of your day to support someone else, whether it be mental or physical support. Looking back, I can see how the unspoken stigma of postpartum blues can really hurt a situation. And I can only relate to how people must feel when it comes to managing postpartum blues.

If you know someone who might be struggling with postpartum depression, reach out. Ask them how you can help. Offer them tangible supportive and suggestive actions, and if they say no at first, follow up! Don’t be afraid to ask more than once, to keep your line of communication open, and to follow up. Your two minute conversation with them could change the outlook for this person for an entire day or even week!

Did any of you suffer from postpartum blues? What was your experience? Did you have to deal with both debilitating affects of a physical condition while trying to stay mentally afloat? Did you hide your blues to friends and family? How were you able to get support? I’d love to hear your story.


*This article, as with all articles on this site are not medical advice. This is simply a personal account and one person’s opinion. If you are struggling with postpartum blues, or what you think might be postpartum blues, please seek professional help immediately. Talk to your primary care physician or obstetrician. Ask a family member or friend to help you with an appointment, or to accompany you to the doctor as soon as possible.


Ten Things to Never Say to a Mother with a Chronic Illness

Are you a mother with a chronic illness? If yes, then you understand that our body struggles with physical limitations that ebb and flow. If you are struggling with symptoms of a chronic illness, then you are inevitably going to have good days mixed in with bad days. Unfortunately, that is the nature of a chronic illness.

Over the years, I’ve come to the realization that there are MANY things you should never say to someone struggling with a chronic illness, in particular to a sleep deprived, physically exhausted, mentally despaired, frazzled new mother, who is also suffering from the compounding effects of a chronic illness…

Here are a few suggestions for what NOT to say to a mother with a chronic illness:

  1. “I am just as tired as you are.”
  2. “You don’t look sick!”
  3. “You MUST be feeling better because I see you are running around with the kids.”
  4. “Have you tried holistic treatment?”
  5. “Have you tried going gluten free? Dairy free? What about trying vitamins?”
  6. “Why can’t you bring the kids over to see me/us?”
  7. This coincides with 6. “Why can’t you do ‘x’ activity with us today – since you did ‘y’ activity with them yesterday!?”
  8. “I hope you get well soon.”
  9. “You look great!”
  10. “Thank goodness it’s not cancer.”

Have you ever been frustrated with something someone said to you about your health and well-being, in relation to your chronic illness? In a perfect world, wouldn’t it be nice if everyone knew the right thing to say to everyone, all the time? What are some things that you would rather hear?


The Benefits of Napping

Are there benefits of extra sleep for both children AND mothers with chronic illness?

To nap. Or not to nap. This is often a debatable and sometimes controversial subject in the world of parenting and motherhood. Although, it shouldn’t be…

Lucky for our children, both my husband and I have always aired on what is best for them, and not for us. Who would think!?

If our children needed to nap, by all means, we encouraged it, and napped they did. Lucky for me, I survived the early stages of motherhood with a chronic illness because our boys napped well into their childhood. It was almost as if their bodies knew that napping was not only beneficial for them, but that I really needed them to nap. Looking back, it was all a godsend…

With a little understanding of when my chronic illness was at its worst, I now know why it was so important for me to honor why my children napped. Not only was napping great for their growth and development, but during their early years, I really needed the downtime, and I especially encouraged napping at home. You see, putting my feet up for a break during the day was extremely important. It was one of the only things that kept me going, and just barely.

My girlfriends, and even family, however, thought it was crazy that our days were cut short, quickly running home for nap times. And the judgement was awful, the whispers from people and their perspective was even worse. Why was I so “anal, structured, and difficult”, because I “had” to bring our kids home for naps!? What they didn’t realize, or try to understand, was that naps were physically my saving grace. Nap time allowed for me to recharge, re-energize, and collect myself, for round two of chasing a toddler and rearing an infant for the second part of the day.

When my friends had their babies nap “on-the-go”, or had their toddlers “skip naps”, I believe my friends were healthy and capable of getting through the day WITHOUT much downtime. It wasn’t that we had opposing parenting perspectives. Or felt the need to compete for whose kid DIDN’T need to nap. But it was more that our families had two different sets of needs. I had(ve) a chronic illness and I now realize the difference. I hope they do now too.

But in the end, what is best for our family, may not work for the next family. And for our family, we have reaped the rewards of napping. The benefits for both myself and our children, have far outweighed the repercussions I ever received. So, your kid stopped napping when they were 1.5 years old? That’s okay, mine didn’t stop napping for a long time, and it was a win-win for our family.

And these days, if their body needs it, or if mine does too, napping becomes a household ritual. Even my husband and the dog enjoy a good nap.

Do you, your children, or family take naps? Are they structured at home? And do they help you physically get through the day? How is your napping perceived by family and friends?


Judging a Mother By Its Cover

I am the picture perfect of health. And for some reason…since I look healthy, it is really hard for some people to understand that I struggle with a chronic illness. Unfortunately, looking healthy and normal, has its MAJOR disadvantages. It confuses the crap out of people.

I think people have a hard time understanding how someone who looks normal, is even sick, because people are so quick to judge. They judge you on your good days, and it is human nature to judge.

But, judgement is my biggest pet peeve. Because when it comes to having a chronic illness, many times, “chronic”, is also “invisible”. And even more so, “chronic” means “long term”. In other words, more often than not, you cannot see a chronic illness, chronic conditions do not go away, and most are not curable.

We are taught at a young age not to judge a book by its cover, yet, looking healthy makes it incomprehensible for people to understand that you are sick. In fact, it makes some people go as far as questioning the very illness that is debilitating your life.

Why is that? Why is it so inconceivable for someone to understand why your body cannot be failing you on the inside, while looking great on the outside?

Judgement is by far the hardest social dilemma for me. In the past, friends, and even family, have questioned the very issue of whether I am sick or not. And for someone dealing with a chronic condition and often times debilitating fatigue, this is the biggest slap in the face!

I think one of the WORST things that you can do to a person with a chronic illness, is to make them feel like they need to prove they are sick. To make them prove why they can do some activities and not others.

I had the pleasure and gluttony of watching the Real Housewives of Orange County this past season, and the famous Yolanda Foster went through a phase in her life where she not only had to battle her chronic illness at its worst point, but she also had to deal with the social stigma of friends not believing she was, in deed struggling with debilitating symptoms.

Do you ever feel like you need to prove your condition? To friends or family? What are some ways that you have had to prove to your friends and family that you are not feeling well?



Inspiration for a mother with chronic illness…

Inspiration comes in many forms. I feel like this specific inspirational quote has become my daily mantra…often people say to me, “I just don’t know how you’re doing this, you look great.” and “You’re so incredibly strong.”

But I can’t help but think — “what’s the alternative?”

As a mother, you really have no choice to persevere. As a mother, you never know how strong you are until being strong is the only choice that you have.