Bring in local experts willing to share their expertise.
Make sure an agreement of confidentiality between members is stated at each meeting.
Send a follow-up email after the meeting to see if anyone had any thoughts or suggestions about the last meeting and if there was anything else they’d like to touch on during the next meeting.
Don’t be afraid to connect with attendees outside your meetings. Support groups are a great way to make friends with a lot in common!
Option 3: Mentors
Mentors don’t have to be full-time support or even just one singular person who is committed to your situation alone. It can be a mentor from a support group or other patients who have gone down a similar road. You can find mentors in a variety of places, including in-person and online support groups, through friends and relatives, and even through your doctor if he’s willing to forward your information on to another patient. The most important thing is that you feel comfortable going to them in times of turmoil to ask questions, seek advice, and find comfort.
Not long after I was first diagnosed with POTS, I got a phone call from an experienced patient. She explained that my mother had posted my story on a forum online and she’d asked for my number to get in touch. She said that she’d been diagnosed only a few years ago, but that she was sure she’d had this disease since childhood. “Do you still work?” I asked her. (I straddled the line of unemployment at that time, and that was one of my most burning questions.) She said, “Oh yeah, definitely. There’s only been a few flares where I wasn’t able to.” I felt my heart do a backflip in my chest. I fired off more questions: “Do you take medications? Have you had any heart surgeries? Are you better off living in a colder climate?” She quickly answered all my questions, mostly optimistically. I continued with my line of questions. “Were you able to have kids?” I asked. “Three,” she said, and I had to wipe the tears away. I said, “You didn’t have any problems? You were fine?” She confessed, “I gave birth in the cardiac unit. I almost had a heart attack during labor, but they monitored me and I was okay.”
She continued to explain that not everything was simple, but it was survivable. This conversation was so important to me because we can get mixed signals about what we may or may not be able to do in the future, especially from doctors who are trying to express how important it is that we take our diseases seriously. Hearing from another patient can help put your fears into perspective and open your eyes to options you didn’t know you had. It was the first time since researching my diagnosis online that I started to feel optimistic.
Whether you’re brainstorming medication options with another patient in the waiting room, or you’re getting a call from a stranger who found your story online, these kinds of connections are a great way to start the process of getting educated about your disease. It can also help alleviate some of the fears you have about how your life will look. And, later, when you feel you’ve gotten a better grip on your disease, make sure to pay it forward to another newbie.
What Makes a Good Mentor?
Someone who has balance in their own life, despite their condition
The ability to break bad news gently
Someone who has the time and knowledge to answer questions on living with the disease
Other Kinds of Support
Therapy
One support option you might consider is a more private one. One-on-one therapy can be a useful tool in the struggle to balance your daily life. Checking in with a licensed counselor once or more a week can give you an opportunity to vent, discuss setbacks and growth, and help you to make sense of your feelings.
Before I organized the first support group, I tried going to a therapist to develop some coping strategies. I’ll admit, it took trying out several different psychologists before I found one I felt comfortable with. For me, psychoanalytical therapies that explored issues in my childhood were completely unhelpful for teaching me how to handle my problems. Sometimes venting about my stress felt like a relief, but when there was no constructive follow-up, it just made me feel more helpless. I needed action. I then discovered cognitive and behavioral therapies. This kind of therapy taught me to examine my roadblocks, set goals, and recognize progress. I also needed a very vocal therapist who would help pull me out of my shame or pity spirals and get me back on track. I did sessions on and off for about two years before I felt confident that I was on a good path to continue managing my disease on my own.
Therapy is available for free or at a reduced cost through multiple channels. I was fortunate enough to get a reduced rate from a local Jewish Community Center. You’ll find that many other community and religious centers offer non-religious based counseling. You can also check with local universities who have programs for students training to be psychologists. Many insurance companies also cover therapy for a small co-pay. For patients who are homebound, there are also therapists who make themselves available online through Skype and other video-to-video programs.
Therapy is certainly a personal choice, and different kinds work for different patients. You may try exploring a few different types of therapy before settling on one treatment. Many psychologists are covered under major insurance plans, look for a therapist who is within your plan. Start by asking your insurance company for a list of psychologists in your zip code.
Professional and Academic Support
As we mentioned earlier, both schools and work places have rules to follow when it comes to providing safe and accommodating spaces for employees and students. Don’t be afraid to reach out to your guidance counselor or HR representative for guidance on what accommodations are available to you.
Community Support
Neighbors, local government, and local non-profit organizations are all good support resources. (Well, maybe not all your neighbors, but hopefully you’ve got one or two that will help shovel the sidewalk when you’re too weak to pick up a shovel.) Programs like Meals on Wheels can help you get nutritious food when you’re unable to shop. Many county offices offer free or discounted transportation to patients.
Non-Profits
From patient education to assistance with medical bills, there are thousands of non-profit agencies across the country whose sole purpose is to help patients lead a more successful life. There are non-profits that help pay medical bills (such as, https://www.patientservicesinc.org), help you learn how to become a more empowered patient (such as, http://patientadvocate.org), and programs that can help to make medications more affordable (such as http://rxoutreach.org). Disease-specific non-profits can help with a variety of problems. For instance, those with Fabry disease can reach out to Fabry.org to help pay an odd utility bill since air-conditioning is a life-sustaining need for patients with temperature dysregulation. Do a little exploring online to see what non-profits might help to eliminate for certain disease-related challenges in your life.
Spiritual Support
Many churches, temples, and other places of worship provide clergy support for one-on-one counseling and support groups. Joining a bible study or prayer group can give you a new source of support that you may not have considered. These resources often provide these services at little to no charge. This is a possible option for patients without insurance to receive the counsel they need to cope with the challenges of their disease.
For faith-based individuals, turning to their religion during times of duress can provide great comfort and support. Embracing your spirituality can help you to cope with your situation, give meaning to your journey, and connect with others going through similar struggles during activities like group prayer.
It’s Okay to Need Support
Whatever you choose as the channel to give and receive support, remember that the urge to connect with others in a similar situation as you is a natural thing. It doesn’t mean you want to throw yourself a pity party and it doesn’t mean you need to share your most intimate thoughts. At the heart of a support system is an avenue to give yourself the opp
ortunity to grow and learn from others.
Check in with your designated disease organization for a list of local support groups and professionals. For patients without a diagnosis, you can still turn to organizations like SWAN (Syndromes Without a Name) to find local support. Once you’ve established an effective outlet for coping with the stress of your disease, you’ll be better equipped to deal with the real challenge of being a prepared patient.
Chapter 7
The World Won’t Wait: School and Work
If you’ve grown up with your disease, it won’t be a huge surprise that your education, career, and social life will be another thing that’s massively affected. At some point, you’ll start to witness a pattern develop in your life. You’ll feel well, so you have more energy. That energy helps you do well at work because you’re able to focus on your projects and not your symptoms. Success at the workplace then leads to a balanced social life, which then leads you to start making plans for the future. Then this happens: Something (a meal, stress, a missed medication, a new medication) triggers your symptoms, your energy decreases, you start to do poorly at work because you have to reserve your energy to do everyday tasks, you have no available energy for friends or your partner, and you get depressed and stop making plans for your future. As you become consumed by the feeling of having the rug pulled out from under you, you realize that despite your entire world falling apart, life is still going on around you, without you!
After a relapse like this, it’s a mad scramble to pick yourself up again, catch up on your schoolwork and your responsibilities, and check in with all the people you have relationships with. In the midst of picking up the pieces after relapse, you also have to carry the incredibly inconvenient burden of knowing that you can push, run, and hang on for dear life, but the reality is that you will never be capable of living a life uninterrupted by illness. Heavy, right?
For me, this epiphany came in two waves. The first emotion was an incredible sadness. The life I had hoped to live was forever changed. I could no longer ignore that some of my life goals would now have to be altered. The second emotion, however, was incredible relief. Fully understanding the limitations of my disease and starting to envision a more realistic and functional life plan gave me a reprieve from the dark cloud of uncertainty. There’s just no room for improvement in life without accepting the idea that we must respond to each new crisis in a comfortable and effective way, instead of fighting against it until we’ve exhausted ourselves.
It’s a natural reaction to want to grieve the life you wanted had you been born into that “perfect” body. You may feel sadness when the door is shutting on some of the paths you wanted to take. It’s also a natural reaction to realize that you can be honest about your future without completely losing your hope, happiness, and sanity. It’s okay to feel relieved that you no longer need to rise to the expectations that repel the reality of your condition. Once you get to this moment in your journey, you can start to realistically plan and prepare to live a meaningful life.
When it comes to exploring options for your future, it’s important to keep an open mind. Your timelines may be different from others, and your roads a little less traveled. We’ve talked about how to halt our guilt, go about making new friends (and keeping old ones), build social networks, and create your elevator pitch. It can also help to know that by admitting and accepting your limitations, you can now create the life you want.
Going to School
As a high school student, if I wasn’t high-tailing it to class in between bathroom breaks or explaining my absences to everyone from guidance counselors to teachers, I was somewhere in the nurse’s office, trying to untangle the very complicated storyline of my undiagnosed disease. I was a hot mess.
Traditional schooling isn’t designed for those who haven’t learned to manage their disease. Who the hell ever learned to manage their disease while still in high school? Trying to “get by” without assistance from your school’s faculty and staff is nearly impossible. It’s important to set appointments with your school’s disability program coordinator and discuss your options for schooling. Start by calling your school’s guidance counselor. Students are generally divided between different counselors by last name, so check with the front office staff to guide you to the right one. When you’re able to get a meeting with them, make sure you come prepared. Bring the following with you:
Documentation from your doctor showing proof of your disease and what activities the disease might affect (sports, attendance, etc.).
An idea of what sort of accommodations you’d like to request. You might want to request an elevator pass so you don’t have to climb stairs. Or, you might want to ask that your teachers seat you in the front of the classroom so that you can see the board better. You can also ask for extensions on projects, leniency with attendance, and information on how to deal with an escalation of symptoms and how it would affect school work.
A list of questions to ask about what the school’s policies are that might affect you. Do they allow students to bring lunch from home to avoid possible food allergy triggers? Can a student with visual disabilities bring a laptop or other device to help with eye strain during lessons? Can a student leave a classroom without permission if they have an emergency?
An emergency contact list with your parents’ information and any others who have signed permission agreements that allow them to pick you up from school in case you get ill in the middle of the day.
Any past documentation from your current or previous schools.
During my freshman year of high school, I ended up being part of a program called Hospital Homebound (HH). This was in an era where we were still getting used to using the internet for everything. My classes were held through conference calls with my teachers and a few other students, and my assignments were emailed or mailed in. Since then, getting an education outside of the classroom is a whole new world. Virtual school is now available for middle schoolers, high schoolers, college students, and those who want to take continuing education courses. They can be done in your spare time, and on your own schedule in the comfort of your bedroom, living room, or hospital room. Your local school district should be able to offer you information on how to register for their online programs.
Since I had dropped out of one or two classes during my sophomore year, unable to find a balance between absences and coursework, I was able to re-take classes through a virtual school on the weekends or at night. By my senior year of high school, the year I was most debilitated by my disease, I felt like I had exhausted all my options. I was in advanced classes that I needed to sit through the lectures for. I was falling behind on all my assignments. I was only able to stay conscious for about four hours each day. It usually took me an hour to wake up, get ready, eat breakfast, and get to my first class, which then only left me with three hours. Since my first period class was two hours, that gave me only half of one other class I could sit through.
When I went to see my principal about this, I said, “I need help. I need to graduate on time and I need to get through all my classes. I can’t stay awake and this isn’t working.” Mr. Licata wanted to help me the best that he could and asked me what would work best for me. I told him, “My AP English final paper is a beast. I need to be in the workshop with my teacher in the morning. I’m going to have a math tutor in the mornings on the weekend so I can get those classes taken care of, and the rest of my classes need to send me home with the reading material and the assignments. I can only be on campus for three hours a day. Max.”
The school had a lot of restrictions on absences and attendance. Technically they were supposed to fail students who missed seventy-five percent or more of their scheduled classes. But after I pleaded my case, they made an exception. A meeting was called with my teachers. They were asked to make themselves available to me by email, to allow me to hand in my assignments in the mornings, and to have new material waiting for me to pick up. I finished my final paper in English a
nd for the rest of the year managed to make it to bed unscathed every day before noon.
None of this would have been possible if I didn’t ask. Learning how and when to ask for help is going to be a huge asset to you in life. When it comes to sustaining a sense of normalcy and promoting the likelihood of your success, asking for help is the most responsible thing you can do.
Making an Education Plan
Let’s talk about the system that’s already in place for students in need. A 504/IEP plan is an individualized educational plan designed to support students with disabilities. Even if you’re not missing a limb or legally blind, this plan can still cover you. It’s individualized for your needs.
Your 504 Plan/IEP is your responsibility. You’re going to be standing on the front porch for a long time if you never knock. To receive the benefits and allowances of a disability plan, you need to ask for it! For students with invisible disabilities like Crohn’s disease, fibromyalgia, chronic fatigue, lupus, and narcolepsy, your school will be less inclined to go out of its way to make sure you’re on the plan. You will need to go to your guidance counselor as early in the school year as possible and ask to set up a plan.
What Will Your School Define as a Disability?
In 2009, the Americans with Disabilities Act of 2008 came into effect. It stated that the definition of disability had to include those who demonstrated symptoms that substantially limited a “major life activity.” According to this act, symptoms can also fluctuate between active and inactive and still be termed a disability, even when the symptom does not impact the learning process. These included:
Surviving and Thriving With an Invisible Chronic Illness_How to Stay Sane and Live One Step Ahead of Your Symptoms Page 9