How Dealing with a Chronic Illness Changes You

I got sick suddenly in April of this year – seriously ill, unable to eat solid food, constantly nauseated/throwing up, severe abdominal pain – and it caught me completely off guard. I’ve always been a relatively healthy person. At 38, I haven’t had many medical issues, besides my lifelong issues with depression but even that had been well-controlled for four years. Many ER visits and tests and procedures later, I had a diagnosis in early May: severe gastroparesis. Essentially, my stomach muscles are paralyzed and I am only able to empty my stomach by gravity, meaning that I am limited to liquid-only foods. I live on water, Coke and nutritional supplements like Ensure and Boost. Gastroparesis is often progressive and there is no known cure, only treatment to relieve symptoms. My case is idiopathic – meaning we are unsure how or why I got it – but do know that it has to do with damage to the vagus nerve (which controls digestion) either by a virus (I was in the hospital for nasal surgery the week prior to getting sick) or by an accident (I had a nasty fall a few weeks before I got sick).

The last 14 weeks have been a huge struggle, both physically and emotionally. I know you probably think I look great in the photo above, but what you don’t know is that it took weeks to take and I had to budget my energy to actually do my hair, wear makeup, get dressed and set the whole thing up. You don’t see that I’m at my lowest weight of my adult life, the trail of the implanted port line over my collarbone into the jugular vein on my neck or the dark circles I Photoshopped from under my eyes that never go away. On a good day you might see me at the store and never know I was sick. You wouldn’t know that it took an amazing amount of energy to walk from the car into the store, through the store to do my shopping and walk back through the parking lot again to my car. Even if I’m hurting, I can hide it really well. I’ve gotten good at that because people just don’t like to see it. On a bad day, you might not see me at all because I might not even be able to get out of bed.

This is the many ways living with a chronic illness has changed me. At the end of this post, I’ve included some tips for loved ones and friends of those with chronic illness … simple ways you can help that make a big difference to those who are struggling.

August is Gastroparesis Awareness Month and you'll see a bunch of posts and promotions on my Facebook page next month to raise awareness of this rare disorder. I have struggled quite a bit these past few months with coming to terms with having a serious chronic illness that has completely changed my way of life. More on that in an upcoming post...

 

Grieving process

I strongly believe there is a grieving process involved when you’re diagnosed with a chronic illness, especially one you’re told has no cure. Elisabeth Kübler-Ross in her 1969 book On Death and Dying outlined the five stages of grief: denial and isolation, anger, bargaining, depression, and acceptance.

Even before that first trip to the ER for abdominal pain back in April, I was in denial for almost a week that anything serious could be wrong with me. I had always been relatively healthy and active. I rarely got sick, save for the wicked case of influenza I caught last December. I didn’t even have a primary care provider, I only had an OB/GYN because all I’d done for the last 14 years was have babies … not see doctors. I did go to the ER eventually and something was wrong with me, they just didn’t know what. As the weeks went on, it became clear that something was seriously wrong with me and eventually my gastric emptying test confirmed my gastroparesis diagnosis. I was relieved at first to have a name for all my symptoms and what I’d been feeling the past month or so, but that relief was short lived.

As I continued to get worse – not better – after my diagnosis, I became angry that I was forced to live in a body that couldn’t do something as simple as eat food. Angry that my symptoms were causing me to miss out of much of life – my son’s baseball games, caring for my toddler (I was too weak to care for her while my husband worked so she went to daycare while I was off on disability), my 8 year old’s school events, intimacy with my husband …

I didn’t really have anything to bargin with, so I sort of skipped that stage and went right into the depression stage. About seven weeks ago it became clear I was going to need IV fluids daily in order to keep my weight from dropping as rapidly as it had been and to give me a little more energy to function. Due to the never-ending nausea, I couldn’t keep enough fluids down to stay adequately hydrated. This meant going to the hospital as an outpatient almost every day, painful IV sticks and more time away from my family … I dreaded everything about the process. After three weeks of this, I requested an implanted port and home health care from my gastroenterologist so that I could take care of myself at home and be with my family. Four weeks ago, I had my port implanted and began doing my own infusions.

It was at that point – of realizing that I was sick enough to need this port to survive – that I reached acceptance. I still have my days where I’m angry or depressed, but overall I’ve accepted this is what my life is going to be like for the foreseeable future. I’m strangely okay with the odd bump of my port on my right chest and the two scars the accompany it. I’m getting used to seeing my ribs when I look in the mirror and seeing the old scar I had on my upper lip that reappeared when I lost enough fat in the skin under my face.

While I’ve accepted this is my reality, I still remain hopeful there is a treatment that will help me or that perhaps someday a cure will be discovered. In the mean time, I’m hanging a lot of hope on a little white pill I take twice a day – Motilium – and praying that it continues to work for many years.

Energy

This is something I’ve struggled with everyday since getting sick way back in the middle of April. There’s a theory out there called the Spoon Theory, which is a metaphor used to explain the reduced amount of energy available for activities of daily living and productive tasks that may result from disability or chronic illness. The term spoons was coined by Christine Miserandino in 2003 in her essay “The Spoon Theory.”

The essay describes a conversation between Miserandino and a friend. The discussion was initiated by question from the friend in which she asked what having lupus feels like. The essay then describes the actions of Miserandino who took spoons from nearby tables to use as a visual aid. She handed her friend twelve spoons and asked her to describe the events of a typical day, taking a spoon away for each activity. In this way, she demonstrated that her spoons, or units of energy, must be rationed to avoid running out before the end of the day.

That has been the most difficult thing about dealing with a chronic illness – not having enough spoons. I have good days and I have bad days, unfortunately, so far, I’ve had a lot more bad days than good ones. I’ve had weeks where I would save all of my energy up for the entire day with the goal being to have enough energy to simply take a shower that evening. Everything in my life has suffered from a lack of energy:

  • I can’t take care of my toddler during the day when my husband is at work, so she goes to daycare.
  • I can’t keep up with housework. Just vacuuming the rug in the living room wipes me out for hours.
  • I can’t blog as often as I like here because sitting at the computer and trying to form cohesive thoughts isn’t always possible because my body aches and my mind isn’t clear.
  • I can’t take photos of my children or other people as often as I’d like. I can’t grow my photography business as quickly as I’d like. I did one professional shoot earlier this month and literally spent two days in bed recovering from an hour’s worth of work.
  • I have days I can’t even get out of bed, I’m that tired, nauseated and in pain. Or get dressed. Or take a shower.
  • I can’t do activities I used to enjoy, like riding my bike, going for a walk with my family or sometimes even just spending time outside in the backyard watching the kids play because the heat and humidity make me instantly nauseated, dizzy and weak.
  • I can’t work. I love my job (I’m a labor and delivery nurse) and I’ve been on short term disability since April.
  • It’s hard to spend time with other people because so much depends on how I’m feeling that day … making plans is nearly impossible.

My husband has been amazing through all of this and has picked up so many of the things I used to do around the house and has become almost the sole provider of child care to our children. I try to thank him often and let him know how much I appreciate all he is doing and let him know that I understand this all has to be very hard on him, handling everything all of the time. I’ve tried to let go of having a spotless house and crossed off to-do list every day. It’s still a daily struggle for me as I tend to be very type-A.

My family has also been amazing as well, whether it’s coming up for the day or weekend and helping watch the kids for me, helping financially or even sending a simple text checking in on me … their support has meant the world to me.

Isolation

Because of my low energy levels and the need for IV fluid nearly 10 hours out of every day, I don’t get out of the house much. Many days I’m home by myself during the day while my husband is at work and the kids are in daycare. It gets lonely.

I was fortunate to find a great support group on Facebook – Gastroparesis Support Group – and they have been something of a lifeline the last two months. There’s always someone on there who understand what I’m going through on a particular day and who will celebrate the small victories with me (I cleaned the kitchen last week!).

I have a few friends who have gone out of their way to stay in touch and that has meant the world to me. They understand that I’m not always going to be having a good day and they don’t mind. When you get sick like this, you quickly find out who your true friends are. And that might surprise you a little.

Financial worries

Things have always been tight for my husband and I. We have a lot of debt from both returning to school mid-life and changing careers. We just barely make it month-to-month when I’m working full-time. One of my biggest worries, day-to-day is about finances.

I’m very fortunate that I have short-term disability available to me where I work. As soon as I got sick and it became clear this was going to be an ongoing issue, I applied for FMLA, which gave me 12 weeks of leave from my job as a labor and delivery nurse at a local hospital with job protection (meaning they couldn’t let me go because of my illness). I received a portion of my salary during that time, but nowhere near what I usually took home. I was still too sick to care for Ella at home, so I was still having to pay for daycare despite not working, so our expenses really weren’t any less.

Two weeks ago, my FLMA ran out and my GI doctor and I don’t believe I am well enough to return to work, even part-time. Provided the hospital I work for wants to keep me, my short term disability benefits will continue for another 12 weeks. I’ve talked with my manager and she told me they value what I bring to their company, do want to keep me and will work with me so that I can return to work part-time when I’m able to. Still, I worry greatly about this. There’s nothing stopping them from changing their mind at any time. I had originally planned on trying to return the last week of July, working three 4-hour shifts a week, but I am not going to be able to do that. Now, I’m looking at maybe returning very part-time in the middle of August. I’m hoping they want to keep me until then and praying I’ll be healthy enough to handle it.

To make ends meet, on good days, I’ve started going through our storage units and listing all the stuff we don’t need anymore on eBay, Etsy, Craigslist and Facebook. For the last few months, it’s definitely helped make ends meet. It helps that we had accumulated a lot of duplicate/extra stuff when we combined households four years ago and if we can combine the two units into one, that will also save us some money.

The medical bills are a whole different story. We have good insurance through my husband’s employer, but I still have a personal deductible and maximum out of pocket I have to meet before it pays 100 percent. I literally have three month’s worth of insurance statements and bills from ER visits, specialist visits, surgeries, test and procedures, home health care and more that I have to go through. It’s one of those spoon things … I just don’t have enough spoons to sit down and try to figure that all out right now. Eventually I will, and I’ll need to set up some sort of payment plan to start paying for all of it.

So, I’m not quite sure what’s going to happen with my job, if I’ll be able to return to work in some capacity, if I’ll continue to get short term disability, what’s going to happen when I run out of things to sell online … I did call an attorney in Madison who specializes in disability to see what my option were if I wanted to pursue getting SSDI, but in order to qualify for that – if you can get approved, which is really difficult – you have to have been out of work for a year. Right now I have no idea what we’re going to do if we need to pursue that route. I keep praying I’ll come up with an answer.

The future

I used to have a pretty good idea of what the future held for me. I figured I’d work my job that I loved, raise my children, enjoy being married to the man I love and do all the normal things normal families do. Now, I’m not confident about that at all.

I have no idea if I’m going to find a treatment that will relieve the majority of my symptoms so I can lead a “normal” life again – work, be the type of parent I want to be, run my photography business, enjoy my hobbies. I have no idea if my gastroparesis is going to progress to the point of my needing tube feedings or TPN (total parenteral nutrition delivered via IV) simply to survive.

I’m suddenly very thankful for the life insurance policies I bought many years ago when I was healthy and the thought of a chronic, debilitating illness never crossed my mind. There’s peace of mind in that for me, for my family. I know I’d never qualify for one now.

This illness has reinforced one thing that always been a constant in my life – I’m a fighter, I always have been and I always will be. I have so many reasons to keep fighting, even on those really terrible days when it’s a struggle just to get out of bed. I have learned to find enjoyment and peace in the little things – my toddler’s devious little smile when she knows she’s doing something she’s not supposed to, my older daughter’s uncanny ability to know when I’m not feeling well and climb in bed and snuggle with me, my son’s offers to help me carry groceries or watch his siblings so I can rest. As sick as I am, I’m still here and still get to enjoy those little moments and they mean more now than they ever have.

I will continue to blog about my journey with chronic illness and educate others about gastroparesis to raise awareness and understanding because it’s important to me – to document the experience and journey and open people’s eyes to the realities of something they might understand very little about. It’s the journalist in me. August is National Gastroparesis Awareness Month and you’ll notice that I’ve changed my Facebook header to reflect that and I’ll be posting about it throughout the month.

Many of you reading this probably wonder what you can do to help someone you know who is struggling with a chronic illness. I’ve made a list of things you can do to help, if you’re interested.

What can you do for a friend/loved one?

First off, ask them directly “What can I do to help?” Perhaps is something as simple as just stopping by for a visit once a week so they feel a little less isolated, or maybe it’s something like offering to come over and tidy up their house/do their laundry/mow the yard.

When I first got sick, the girls I worked with and other friends took turns bringing over casseroles and other dinner items for my family. It was a huge help and so appreciated because although I couldn’t eat it, my family still needed to get fed and I didn’t have the energy to go to the store and prepare meals for them. It made life those days so much easier and was so appreciated!

What else can you do?

  • Offer to come over and take their dog for a walk at the dog park/beach. Chances are, they don’t have enough energy to do this themselves and their pet really needs the workout.
  • Offer to take their kids for a couple hours one afternoon. Take them to the dollar store. Take them to the park. Take them to the library. Take them to the splash pad. Just give mom a couple hours of quiet time to relax and focus on herself.
  • Offer to pick up their debit card and a grocery list and go grocery shopping for them. There’s nothing worse than being stuck at home without food for your family because you’re too exhausted to make the trip to the store. Do you live somewhere where online grocery ordering is possible? – offer to pick up their order for them.
  • Offer your teenager’s inexpensive help – babysitting, lawn mowing, cleaning the floors, etc.
  • Offer to come over and help them do something as simple as go through their mail.
  • Offer your help driving them to appointments if they can’t drive on their own, are on pain medication or don’t feel well enough to.
  • Pool your resources with a group of friends and hire a house cleaner for a few hours.

Don’t live near your friend/family member?

  • Don’t underestimate the power of uplifting texts sent throughout the week. Your chronically ill friend might be to tired to talk on the phone with you, but I’m sure she’d love to know she’s being thought of.
  • Make them an uplifting playlist of your favorite music and send it to them.
  • Send them a good old fashioned card, letting you know you’re thinking of them. It’s mail they’ll love to receive instead of the endless arrival of bills and insurance statements!

As for me, I’m going to take each day as it comes. I’m going to keep praying that the experimental medication I’m on starts to work and I’m going to keep fighting, keep hoping and maybe things will start to change for the better!

For more great resources and information, check out Emily’s Stomach here!

Are you struggling with a chronic illness? How are you handling it – what makes things easier for you? What are ways you wish others would help? Leave me a comment and let me know!



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16 Comments

  • Leighann

    I don’t have a chronic illness, but I do like reading this because there’s a lot to learn. I can imagine there is definitely a grieving process and so much to also work through with family and friends. Thank you for sharing!

    • Jen

      Thank you for reading … it’s been a journey for sure! Thank you for your support, I appreciate it!

  • Meg

    Wow, what a journey you’ve been on. I can’t imagine how much this has turned your life upside down, but I’m glad you’re finding support in those around you. I hope that sooner than later your situation will improve or they’ll find a cure. In the meantime, way to keep fighting!

    • Jen

      Thank you … it’s been an experience, that’s for sure. As a nurse, I’ve gotten to see things from the patient perspective quite a bit the last four months and it’s been eye-opening! Thank you for your support, I appreciate it!

  • Corey | The Nostalgia Diaries

    Thank you for your honesty, bravery, and sharing your story. I am positive that it will help others going through something similar. Hugs to you.

    • Jen

      Thank you – I believe in speaking the truth, even when it’s hard! I hope that’s what keeps people coming back here! Thank you for your support, I appreciate it!

  • Rachel

    I’ve been thinking of you daily. Thank you for sharing this. I wish there was something I could do to help your struggles, but I’m happy that you’ve at least found a support group to help with the isolation.

    • Jen

      Thank you for your thoughts … they mean a lot! And for commenting… it’s nice to connect with others out there when you feel this isolated. Thank you for your support, I appreciate it!

  • Genesis Alvarez

    I’m so proud (even tho I don’t know you) for sharing this, not everyone has the strength to go through all these and still have a happy face at the end of the day.

    • Jen

      You gotta keep smiling 🙂 Thank you for your support, I appreciate it!

  • Clair

    I hate that you are dealing with this…I know I have said this before, I can’t even imagine! You are most definitely a fighter! A fighter not just for yourself, but for others who are dealing with a chronic illness too. I am hoping the experimental medicine is the answer, especially until they find a cure/answers! Stay strong and praying for all circumstances surrounding you and your family ❤️

    • Jen

      Thank you, I’m hoping this medication is the answer too, so far it seems to be! I have a return to work date of August 21 and I’m excited even though it’s very part-time. Thank you for your support, I appreciate it!

  • All Things Big and Small

    What a journey. Thank you so much or sharing. I know that your sharing your journey, will help others on their’s!

    • Jen

      Thank you – that’s why I write about it… even though it’s hard, perhaps it will help someone going through something similar. Thank you for your support, I appreciate it!

  • Justine @ Little Dove

    Wow, I really had no idea all of the things you were going through with this. I think you’re so amazing and inspiring! I am hoping all the best for you!

    • Jen

      Thank you for stopping by and commenting! Thank you for your support, I appreciate it!

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