This article was done in partnership with Walgreens.
So frequently as moms we listen to all the chatter at the playground or on social media. The conversations about husbands who work too much, partners who don’t work enough, being a single mom, a stay at home mom, a mom working full-time outside the home, but what you won’t hear much of is the struggle of the mom (or dad) with the sick spouse. This is a silent struggle because it is really a place difficult to define and hard to discuss, where do you fit in?
As many partners with sick or suffering spouses may know those marriage vows are sometimes tough to keep – in sickness and in health meant when we are old and gray right? It meant after our kids were grown and flown, goals were reached, dreams were fulfilled and life was lived, right? It certainly didn’t mean a life-altering disease coming to fruition, appearing out of nowhere at twenty-something with a newborn baby in the house, did it? Here’s the thing, life works in mysterious ways and unfortunately, chronic illness or disease is never planned but frighteningly enough, can crop up out of nowhere derailing even the best laid plans.
The silent struggle of the spouse is just this – it is the mid, it is the in between, it does not fit into a simple category or cliche. You are not the one who is sick and suffering, but by God you are right there with it. It is lonely, it is being alone, it is needing to be strong when you can’t, won’t, or just don’t want to. It is grief for what you’ve lost, sadness for what you’ll never have, disappointment, denial, and guilt for all you’ve been given all wrapped up into one messy, scary, silent struggle because YOU are not the sick one, YOU are everything else but you’ve got this!
You bring home a paycheck, make meals, shuttle kids, arrange playdates, and clean house. You also visit the hospital, tend to your spouse, and advocate constantly. You aren’t a single parent, rather you’re a married parent single-handedly raising children AND caring for a sick companion. When they feel good you drop everything to let them spend a day with the kids, forget about homework, chores, and errands that you know you’ll still have to make up for later (this is why you don’t sleep).
When they feel bad you hold down the fort, try to distract the little ones and frequently leave the house with no real direction but to give them some peace and quiet in which to rest. You literally never have time for yourself, any plans are sure to be dashed by an unexpected symptom of the disease, and you’ll oftentimes find yourself both resenting your spouse and thanking god it’s not your child suffering literally all in the same breath because that is what disease does. It is confusing and frustrating, unkind and unexpected, foreign and unpredictable placing you at its mercy never knowing what will happen next, but again you’ve got this!
What is an Autoimmune Disease?
An autoimmune disease occurs when your immune system begins attacking your body’s own healthy cells by mistake. With over 80 documented autoimmune diseases and conditions out there, and many exhibiting the same or similar symptoms, it may take a substantial amount of testing for a person to finally receive a diagnosis, in our situation Crohn’s Autoimmune disease. There is also wide variation in the degree of people’s disease, ranging from mild to severe, and the majority of autoimmune conditions have periods of flare up or resurgence, along with periods of remission with few to no noticeable symptoms at all.
Autoimmune Diseases Include:
- Crohn’s Autoimmune Disease
- Multiple Sclerosis
- Graves Disease
- Rheumatoid Arthritis
- Ankylosing Spondylitis
- Ulcerative Colitis
- Chronic Fatigue Syndrome
How Do People “get” an Autoimmune Disease?
Autoimmune diseases are not contagious, including the Crohn’s Autoimmune disease. These are not something that spreads between groups of people, nor do they have a specific set of traits, rather doctors and researchers focus on certain risk factors that tend to be prevalent among those affected. With the number of serious chronic illnesses and autoimmune diseases on the rise, families everywhere are being impacted by these unfortunate and unforgiving conditions daily in our world.
Risk Factors that Increase the Incidence of Autoimmune Disease Include:
- Genetics and family history
- Environmental factors such as stress and foods one consumes
Read More: Coping with a Parent’s Illness
The Necessity of Meds
Frequently the first concern of a newly diagnosed person is whether or not they are going to have to take medication every day. While this is a valid concern, and a very real possibility, medication can usually help to reduce the symptoms of most autoimmune diseases. Unfortunately there is no cure for autoimmune disease at this time, so therapies that control the disease, lessen the symptoms and give us hope for a brighter tomorrow are the only option.
Back to that part about being a spouse…medication management will often be added to your list of things to do. Reminding your spouse to take meds, encouraging them through the side effects, and simply convincing them that they need to be as present as possible in this life you’ve created, as perfectly imperfect as it may be.
Cheerleader or not, this is part of life with a chronically ill person. They are scared, they feel defeated, and they don’t want this anymore than you do. They are just as frustrated with the hand they’ve been dealt, and while it may not be said, just as angry and resentful at the disease for how it has affected their life. Frequently, it is frustrating as the spouse because the sick person may seem selfish spending days languishing in bed, leaving dishes in the sink, or, even when feeling well, spending hours at the gym instead of completing chores or catching up on household tasks. But, realize they too need this time. Periods of sickness are no fun for anyone and they are just doing their best to try and recover or feel a little bit like their old self.
The Walgreens Wake Up Call
Walgreens is here with a wake up call to remind all those requiring medications to ensure proper compliance at all times. Proper medication management can lead to more time watching the kids grow up, improved work performance, and extended periods of remission.
So often however individuals forget to take their meds (especially during periods of remission where they feel good), are inconvenienced by needing to take their meds and procrastinate until they forget, or simply don’t communicate effectively with their doctors. As a spouse, your assistance and encouragement in this area matter greatly.
Crohn’s Autoimmune Disease
With a spouse suffering from Crohn’s Autoimmune Disease we have learned to make things work for our family. Part and parcel to his disease management are bi-weekly injections which have become a necessity. Special meals are made and accommodations are granted, but overall this is simply our life, our family, our normal. With 4 little boys counting on us everyday, my husband is not about to spend the rest of his life on the sidelines, thus managing his disease with proper nutrition, exercise and medication is imperative to our household.
While medication and following the doctors orders are always a necessity, knowledge is power and we live in the age of information. Get in the know! Research your spouse’s disease, get involved in their treatment plan, make sure they have their meds and know what to do with them. Ask questions, get answers, research alternatives, do everything you can to make the best, informed choice for you, your spouse and your family.
Life with disease is difficult for everyone involved, the sick, the spouse, the children, but through it all there is always hope. Hope for a cure, hope for a better tomorrow, hope that the lessons learned will inspire a future of greatness, empathy, compassion, and understanding in those affected. The silent struggle of living with a suffering spouse is exhausting, but marriage, family and togetherness is about the long haul. It is about the future, it is about the good times you share, and it is about taking advantage of all the joyous moments in life while experiencing the real, deep down sense of appreciation that only those who’ve been affected by disease or loss truly can.
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