Tips for the Newly Diagnosed (Thank You to the Ronald McDonald House)

Thank You Ronald McDonald House of Rochester, MN

Tonight marks the end of our 10th trip and the 102nd night our family has spent at the Ronald McDonald House in Rochester, MN during the last six and a half years. As I sit in one of the common areas and type, I cannot help but think of all the families we have met here over the years: some with children who were struggling to stay alive and some with children like ours who are struggling with how to live.

When you’re not a member of the illness club, or a parent who cares for a sick child, you don’t realize what it’s like to live life differently. Back home, people see me as a leader, friend and even a confidant. But most will never see the other roles I play because three people in our family are sick: patient, caregiver, pharmacy tech (you should see our cupboard), part-time insurance and billing coordinator and pseudo-nurse. But as I have explored the halls here at the Ronald McDonald House and at the Mayo Clinic where we receive treatment, almost everyone I see understands these roles all to well…or they will soon.

So tonight, I was thinking…what would I say to a parent or patient who was just starting down the road of difficult illness? (Because there’s not nearly enough information out there for the newly diagnosed!) Here’s what I came up with:

1. Be Patient

Life slows down when you’ve received a diagnosis. And, MOST medical care is not emergent. Unless you need the ER or emergency treatment, everything will take more time than you like. When you’ve received a difficult acute or chronic diagnosis, take a breath. Yes, the patient feels terrible, and it’s devastating to try to take it slow when you see those you love in pain or dealing with illness. But the medical professionals have reasonable reasons for taking it slow. It really is better to change one thing at a time…so you know what’s helping and what’s not. So try hard to take a deep breath and give each treatment or change time to start working.

2. Be Persistent

A diagnosis means YOU have just become responsible to understand and advocate for yourself or your child’s illness. I wish all families new to illness would instantly know what to do in every situation, but it’s not that easy. You will likely need to do some research, make sure you’re seeing the best experts available to you, and learn how to listen to and communicate with doctors and medical professionals. Without stating it too strongly, it is your responsibility to learn everything you can about this illness and understand any treatment plans. Doctors are experts in medical management, but parents and patients are experts in their own and their children’s needs. Speak up when you need to, and be an advocate for yourself or your child.

3. Be Perceptive

Along with illness comes emotion. We all have feelings. Caring for difficult physical needs is not emotionally easy. In fact, it can be downright hard to recognize and accept the “new normal” you’re encountering. Whether this new normal involves living in a hospital, dealing with daily symptoms, medications or treatments, or simply coming to terms with newfound boundaries, our emotions are intimately involved in living well with illness. Be perceptive of your own needs and the needs of your loved ones. Children and adults alike can have some very profound thoughts and questions as they work to understand and cope with illness. Keep talking and exploring, even if you don’t have all the answers.

4. Be Present

Life doesn’t end with a diagnosis. (Even if it seems that way right now.) Ill people and their families have a ton to deal with, but normal things, even fun things, still occur in their lives. Making dinner still needs to happen, even if it’s a call for pizza delivery. Washing clothes is still important. And even doing homework can be a priority. Interestingly, ill people have a great deal of time on their hands…typically spent feeling sick or in pain. But they also wait a lot: for treatments, for doctors, or for answers. Plan ahead now to use this time well. Try not to spend it feeling sorry for yourself or your loved one. Instead, be present with them. Use it to do something fun, or at least distracting. And make the most of each minute. Ill people are still living…so LIVE!

Surely there is much more information and there are many more practical tips to help those dealing with new diagnosis, but those four thoughts are a great starting place. And if I added a fifth tip, it would be this: be open to help. I love coming to the Ronald McDonald House, and for sure, it’s not because I love illness. I love coming here, because I am surrounded by families who “get it” and served by strangers, and after ten visits now, even a few people I can call friends. They cannot make my children or me better, but they do what they can to make everything around me just a little bit easier and even a little bit more fun.

Chronic illness: Learn to be gentle with yourself

Be Gentle with Yourself

In the last few years (meaning many), I have learned to live life at a new pace (meaning slower). And sometimes I even like it.

If you have a chronic illness, a rare disease, or even an undiagnosed illness, you will likely understand what I mean when I say that chronic illness strips away your level of choice. Choices like how you spend your time, where you go and what you eat. My illness is progressive, so each year it seems I can do a little bit less. I have less energy to burn, therefore I must move slower. So one of my highest priorities is to choose how to use the energy I do have well.

But this is harder than it seems. Because it’s not just prioritizing life choices that weighs you down when you have a chronic condition. The emotions involved in being sick can turn ugly. You might get angry with people who provide you with services. You can find yourself out-of-your-mind upset with medical professionals. You can take out your frustrations on your family. But unless you’re accustomed to playing the victim card, the person who typically suffers the most from your raging emotions is you.

Recently I’ve been sick. Coming down with a regular illness (like a cold) on top of being chronically ill just stinks. The illness stays around longer and seems to knock me down harder than it might the “normally healthy” person. So whenever I get a cold, I watch as it slowly turns the corner to bronchitis. And when I have bronchitis, for the first few days, I can do nothing. I lie in bed (propped up of course) and wait. Wait for the days to pass. Wait for the virus to exit my body. Wait for my energy to return. Just wait. And of course this happens whenever I get an illness flare too.

If you’re a caregiver of someone who is chronically ill, think about all that waiting time. For most of us who deal with bouts of illness that confine us to bed, we can have a lot of unproductive time on our hands. And when you feel like you got run over by a fleet of semi-trucks, being unproductive is about all one can manage. Sometimes, we can feel well enough to contribute to the world in small ways from our bed. But often, waiting is what we must do.

And during all this waiting time, our emotions can get a little messed up.

Healthy or ill, each of us have limits. We are not omnipotent. I never have liked the fact that I cannot leap over tall buildings in a single bound. Or that I’m confined to travel by foot or car; flying (like Superman) would be so much more efficient. But I cannot leap over buildings, and I cannot fly. Sometimes I cannot even get out of bed.

In my younger years, I was pretty hard on myself when I would get sick. Endless hours of television aren’t very activistic, and I love action. I used to blame myself, question God and get angry at each and every bad day. Part of this anger was dealing with undiagnosed illness. But part of it was I had no compassion for my own weakness.

Now…I work hard to give myself a break. To be gentle with myself; for I am fighting a hard physical (and therefore emotional) battle. And nowadays, I find my significance in life not in how many times I can pick the children up from school or go grocery shopping or meet a friend, but in the breadth and depth of my own humanity.

My spirit is rich because I no longer fight to rid myself of this illness. Instead, I wait steadfastly…knowing my down time, while not my choice, is what it is. And somehow, once I stopped fighting, I could even enjoy some of those sickbed moments.

Please, be gentle with yourself and your loved ones who have chronic illness. They did not choose to be sick. But in gentleness, they may find peace.