So how do you know when you’ve reached your limit as far as what you feel comfortable letting your caregiver do? Oh, you’ll feel it. Deciding ahead of time is the way to go. Consider things like: Do you care if they see you naked? Do you care if they assist you with going to the bathroom? Do you care if they assist you with bathing? Would you be mortified if they had to give you an enema? For many chronic illness patients, they’ve been so vigorously put through the ringer, most of these things don’t faze them when a nurse does it. You just need to ask yourself: Do I want to be seen in all my inglorious glory by the same person I’m going to want to have sex with as soon as I get better?
Your partner really needs to have a say in this too! After all, this may not have been in the contract they signed at the start of your relationship. Not all partners have the desire to be caregivers. Not all of them have the capacity to be one. However, if they are going to give it a shot, you need to make the situation as comfortable for them as you’re attempting to make it for yourself.
What Does Your Partner Have the Right to Expect from You?
Honesty: Your partner has the right to know when their night might be interrupted by an ER visit. If you don’t tell them how badly you’re feeling, how will they prepare themselves?
Contributions: Anyone can contribute. Be a thoughtful sounding board to their problems or help motivate them towards a goal.
A Chance to React: They should be able to react to every new and frustrating situation. You may have been prepared for the possibility that your disease might progress. You might need new assistive devices, surgeries (minor and life-threatening), or have reactions to your medications that alter your personality. Your partner, however, may not understand the gravity of a progressive illness and might need time and help to process life-altering changes in your health.
This Isn’t a Competition: Just because you have a chronic disease doesn’t mean your partner can’t have a worse day than you. You still need to be a member of the team.
A Break: It takes a village, as mentioned multiple times in this book, to care for someone with a chronic illness. Make sure your partner has a night off occasionally.
Adventure and Opportunity: You may not always be able to go to the midnight showing of a movie, take a flight to Japan, or go on an airboat ride, but you can’t begrudge your partner the opportunity to do these things alone or with family or friends.
Developing a Strong Bond
Being in a relationship with someone with chronic illness requires an understanding of what kind of sacrifices and precautions we need to take to maintain our health. We’ve discussed the perils of dating, the pros of long-term relationships, and the unexpected intimacies that come with caregiving. At the various natural stages of a relationship, more is asked of people with chronic illness. There is a greater vulnerability, a deeper sense of trust, a higher set of expectations, and an even greater possibility of rejection. When a bond is formed despite all these barricades, it is extraordinarily strong.
My husband has woven himself into the fabric of my life. He doesn’t just provide a stable thread to keep the tapestry together, but bends with the motions of change. Whatever we face—unexpected surgeries to unexpected hospital bills—we continue to communicate, vent, push each other forward, and understand that neither of us will always say or do the perfect thing. He remembers that my disease is not a journey I can take on my own, and in turn I keep in mind that he can’t be responsible as the sole pillar of support for all my body’s extracurricular chaos.
How does this work? While at the start of our relationship I may have tried my best to hide some of my less flattering flare-ups, over time I realized that I could not keep up the act. More importantly, he didn’t want me to. Give your partner the chance to support you. If they are anything like my husband, who is incredibly well-meaning but also incredibly unsure most of the time of what to do with me, walk them through it. Take their hand. Recognize that no one is hardwired with the ability to read your mind. Explain what you’re experiencing, what they can do to help, and have patience as they learn about the patterns of your disease. Most of the time there will be nothing that they can do to help but to simply be there, riding the wave with you as you navigate through the worst of your pain or discomfort.
Chapter 6
Creating a Support System
You may hear the word “caretaker” and think of a nurse in scrubs changing out an IV bag or even the main person in your family who most assists you when you’re at your physical worst. However, creating a support system needs to be more than just that one person or the list of specialists you see to treat your disease. A support system for a chronic illness patient needs to extend beyond care for physical ailments; it should also include social, emotional, and even spiritual care.
As strong as my close-knit support system is, I have created an even bigger support network to catch me when I fall. When your family, friends, and partners need a break from caregiving, you’ll need other resources to turn to. Early on, before I had accepted the idea that I had a chronic illness, I hadn’t really considered the possibility that I might need support. With all the humiliation I was experiencing because of my symptoms, I wondered if I even deserved support from anyone outside my immediate circle. After all, my problems weren’t so serious, were they?
I was alone a lot: on the floor, on the toilet, or waiting in the exam room. I felt alone when I went on Hospital Homebound (HH) in high school and when I started taking online classes for college. I got used to being alone in the worst parts of my illness. What did I need to burden others with it for? What exactly could they do anyway? Hold my left hand while my right one knocked back my morning medications? But I needed support; it was obvious.
Having supportive friends, family, work, and school environments all serve a vital purpose. However, you’ll want to remember that there is an entire other group to help support you through your hard times: your fellow patients. At some stages in your chronic illness you’ll need to vent, and you’ll need to have people sympathize. When you hit a wall or want to give up, you’ll need people who will pull you back up and get in your face about moving forward. You’ll need people to help you keep track of progress and remind you just how far you’ve really come.
You’ll also feel the need to help others during these same experiences. Helping others to overcome their challenges keeps your skills fresh, helps you to acknowledge your accomplishments, and gives your struggle a sense of purpose.
What Kind of Support Will You Need?
Support is not optional, but you do have options on how you can obtain it. Your reach can go further than just your close family and friends. There are many infrastructures of support that you may not realize are available to you and created for patients just like you in mind. Below is a list of different kinds of support you may need.
Emotional Support
According to the National Institutes of Health, patients with chronic medical illnesses have been found to have higher rates of depression and anxiety. So, how do you go about obtaining emotional support when you feel depressed or are experiencing anxiety? How do you best resolve your emotional breakdowns? Start by thinking of that one person who you immediately dial as soon as you step out of the doctor’s office with bad news. It’s good to have this one friend or family member to rely on for support as your first line of defense, but they can’t do it alone. You might want to consider different kinds of talk therapies, such as speaking with a psychologist or clergy member. If you don’t feel like sharing the details of your situation with close friends or even just “in-person” with anyone, you can also use the internet to find patient communities to vent in and ask for guidance.
Informational Support
When you’re first diagnosed with a disease, you’re going to experience a few moments of panic thinking about how this disease will affect you down the road. Will it get worse? Will you still be mobile or will you require assistive devices? Will you be able t
o have kids or live independently? How bad will things really be?
Being in touch with those patients who share your condition but have a few more years of experience than you can be hugely beneficial. You’ll be able to get a better footing on your future and adjust your habits accordingly. Learning how other patients handled their disease and what choices they made in their lives to ensure a better quality of life can help you plan, cope with reality, and begin adjusting your mind-set about the challenges ahead. For me, quickly getting online after my first diagnosis and searching for patient stories became an invaluable pasttime. I also visited the pharmaceutical website of the medication I was taking, which connected me to various patient communities.
Medical Support
As we’ll explore throughout the book, particularly in chapter 9, getting effective medical support is key to successful treatment in chronic illness patients. There are other medical support options you may want to consider as well, such as home health care, rehabilitation facilities and programs, aid devices, and furniture that help in assisting with everyday movements.
For me, there have been times that my blood pressure was so out of control that I had to use a wheelchair to get around without fainting. I’ve also received a handicap parking pass to help me get to bathrooms more quickly when needed, and to help not exacerbate fatigue and chronic pain with long walks across hot parking lots. In the past, I’ve had home health nurses who’ve helped me to access my port, set up my IVs, care for wounds, and even just keep an eye on me when I’m on heavy doses of medications after surgeries or bad flares and I have no one else around.
Creating an Informed Support System
Once you’ve developed your social and medical support systems, it’s time to create a system of relevant information to help you stay an informed, proactive patient. You’ll want to find your disease community online, in-person, and through other experienced patients. You’ll need these communities to get feedback, share advice, and find common goals within your plan of treatment.
Option 1: Finding Your Online Community
You have questions—good ones, stupid ones, rude ones—but probably many that you don’t feel like asking your doctor or friends. Online communities provide that anonymity you need while giving other patients the anonymity they need to give honest answers.
Twenty minutes into my first IVIG treatment in the hospital, I whipped out my laptop and started researching. At first, I just wanted to know how I would feel during and after my first infusion. But then I realized that PrimaryImmune.org had entire forums and chatrooms for teens discussing their diagnosis. I quickly skimmed through the website and started to introduce myself. Sitting in that cold recliner, watching the gel-like liquid drip from my IV, I suddenly started to feel my dread melting away. I chatted with five other patients in the middle of getting their infusions that afternoon. They were all excitedly giving me tips and answering my questions.
Since then, I’ve discovered active online communities on social media sites, chatrooms, message boards, and health sites for even the rarest diseases. Through my work at Global Genes, I’ve seen patients connect through shared stories and meet-up events and have witnessed online organizations grow awareness, raise funds, and make change—all online! Not sure where to start? GlobalGenes.org has a full list of rare and genetic disease organizations, and TheMighty.com has a surplus of patient stories on different conditions. Searching through the groups section on Facebook for your disease will usually bring up a few different pages to post on.
What Makes a Good Online Support Group?
Topics that are focused
A non-hostile community with moderators who can help limit negative interactions and spam
Groups that label conversations separately, so there’s a place to vent, a place to ask questions, and a place to get patient experiences on different doctors, hospitals, and treatments
A larger overall organization that offers online support to help provide educational, financial, or other resources
Option 2: In-Person Support Groups
Due to vertigo, I couldn’t drive far. This meant that even when my health was at its worst, finding face-to-face support was difficult. For a long time, I struggled with the idea that I might never know someone who was going through what I was going through. But, after about a year after my diagnosis, with the help of my doctor, I organized a support group.
My doctor and I took several weeks to promote our group. We posted in all the online communities, sent out memos to all the chronic illness foundations, and distributed a press release to local media outlets. We then put together a PowerPoint presentation that outlined the basic symptoms of postural orthostatic tachycardia syndrome (POTS). We reserved a conference room in the hospital’s learning center for 7:30 p.m. on a weeknight. We spread out the chairs, loaded up a table with sports drinks and pretzels, and waited…and waited. My mom was the first to come, excited to potentially meet other mothers whose children had the disease. One person trickled in, then another, until we had a total of twelve people. I remember the shock as the door kept opening to a new face every few minutes. I felt like an alien on earth, meeting my species for the first time. We ended up having people from all over the POTS spectrum—some wheelchair or walker bound and some with other related diseases like Ehlers-Danlos syndrome, mast cell activation disorders, intracranial hypertensions, and fibromyalgia.
I just wanted to cry. It was really the first time that I’d been in a room full of other people just like me, and you could see it in everyone’s faces just how much they wanted and needed the support. I think we were all particularly grateful because we knew how hard it was to keep plans and make it to something like this when you’re struggling with so many symptoms and challenges. I knew immediately that we were a like-minded group because the first attendee showed up wearing the exact same outfit as me! We joked that we were going to make everyone else feel awkward for not wearing the standard POTS uniform.
We looked over a PowerPoint of some different therapies and treatments and discussed who had tried what. We took our time, and talked for a few hours about how our lives had changed and what kind of impact the disease had on our families and relationships. This was an all-female group and most of the women brought their mothers or best friends, so they were also able to share their stories as caregivers.
There is a huge difference between the support you get online (which is also incredible) and the support you get in-person. Giving everyone a hug at the end of the night and interacting on a face-to-face level was so overwhelming. It was like being in a room full of best friends who knew you inside and out despite never having met you before. I was moved. This was one of the best moments I had experienced since I was diagnosed. Just the fact that there were other women at the meeting who were my age and were going through the exact same thing in their lives blew my mind.
Not all patients have good experiences with support groups, however. Travis Love, who shared his story about self-esteem and intimacy in an earlier chapter, also struggled to find the right balance of supporting others and being supported.
When I was first introduced to an MPS support system around my mid-teens, I was immediately turned off because it consisted mostly of bereaved parents or those with young children struggling to survive. I couldn’t handle the constant neediness and depressing stories I heard every day. My condition wasn’t as bad as theirs, and it was already tough enough to be the happy and optimistic guy that I was. I couldn’t risk all the sadness and harsh realities of all those parents’ stories dragging me down. I needed hope, so I avoided them.
For these groups to function at their best capacity, they need to have members that are willing to put in the work. “I can see that support groups can seem like a double-edged sword,” says Travis. “You can either let them drag you down, or be the one pulling people up.” It’s important to remember that while support groups are there for you to find support, they can also be an unhealthy environment
where misery goes to find more miserable company. The goal of a support group should always be to find ways, through the help of others, to move forward in life through your challenges. When you find people who have a similar goal of functioning beyond those challenges, you’ve found the right place. Certainly, the best way to ensure a good flow of helpful information is to make sure there is a designated leader in the group who is planning either activities or topics of conversation. You might seek out a group that meets at different locations, does different activities together, or pursues common interests.
Here are some tips for organizing your own, in-person support group. (For more extensive tips on starting a support group, you can download the online “Support Group Kit” at http://www.newharbinger.com/35999).
Post the date and time of your meet-up in local forums and disease-specific forums.
Get organized! Bring along any materials you want to share, such as information sheets, print-outs from the disease organization’s website, and a sign-in sheet where attendees can list their name, number, and email to be alerted of the next meeting.
Find a comfortable time and place to host the meeting. Try to organize the room in a way where all the chairs are facing toward a center, instead of one direction. You want to encourage a group conversation.
Designate a leader to direct the conversations.
Pre-pick topics to discuss.
Make sure each attendee introduces themselves.
Surviving and Thriving With an Invisible Chronic Illness_How to Stay Sane and Live One Step Ahead of Your Symptoms Page 8
