Chronic, disabling illness brings about many changes in our lives. It doesn't matter if we are experiencing it firsthand or through the eyes of caregiving. Each person must work through their own mixed bag of emotions such the varying stages of grief, like denial, anger, resentment, fear, anxiety and depression. These emotions don't happen in a prescribed order for everyone and may reappear throughout the acceptance and adapting process. Through it all there must be a commitment to focus on learning and mastering new skills that may be required to get through our daily routines. There are new habits, schedules, regimens, therapies and such to recognize and adapt to.
It is a challenging step to realize that help may be required from others when you are new to being ill, the symptoms of new medications, fatigue from therapies or sleep schedules. Experiencing a disabling condition of a chronic illness often leads to the need to ask others for assistance and support. This is often more difficult for someone who has always been independent to learn to do, but it is important to realize that independence is not about doing it alone. It's about being in control of how something is done and the choices around our actions and choices that's important, whether it's who helps you get dressed, how, what you wear, what you eat, setting up your schedule for the week and more. You are the one in the driver's seat of your life, no matter who weakened you feel in mind, body or spirit right now. You can interview your hired help, let services know when a particular staff person isn't working to your liking, show family members what is most comfortable in how to support you when you move or how best to support you as you make your own decisions about your life leading into disabling chronic illness.
Those who discover they are chronically ill and will experience disabling conditions are often shocked and surprised to learn that places that had been a part of their daily lives may have become more difficult to access because of architectural barriers, their stamina and others' attitudes about their condition. Make a list of your previous activities and find out if there is an adaptive version or if you are still fine participating in the same activity to the same or slightly different degree.
Friends, coworkers or acquaintances may not know how to approach someone they never saw in your condition. Bear with them and gently let them know you are the same person, but have different needs to be a part of the life you've always lived before. Offer them understanding and patience as they ask questions and stumble around what to do. Be up front with them about your needs, about who you are becoming with your new awarenesses of your body and health. Don't hide from your illness. If you need breaks, say so. If you need help straightening in a wheelchair or need help steadying on a walker, say so. Ask for support just as you would offer someone else you loved or cared for. As a caregiver, recognize that the person you love is still there beyond the symptoms of the disabling chronic condition and may need your help and motivation to realize their fullest life possible. Be willing to adapt, help them figure out where they fit in with their new condition and symptoms and seek help.
As the one with the illness, understand that you aren't the only one affected by your illness. This isn't just about you, but don't focus on that as if you are a burden. Recognize rather that you aren't in this alone. Whatever a loved one's role may be may need time to set in for them -- and for you as well. You aren't used to this much assistance and asking for it, are you? Of course not! But it is your new reality. Time will tell how you adjust and get back into some semblance of the routine and activities you were once used to. Some will remain a part of your life no matter what, while others will fail this test of their resolve to handle the new you.
One thing is a constant and that is that you are still you. Fight for your life as it was before. Maybe you won't take up the same activities or maybe you will, but not in the same way. Take it day by day. Keep an open and patient mind about you. There will be bumps in the road, trial and error. Let time take its course, seek support groups around your illness and share experience with others going through what you are. No one knows your situation better than you, but the next best thing are people who have been there and done that already. Ask questions, get connected, reach for that peer support, take notes, take people up on their offer to help and support you.
A disabling chronic illness is a very personal experience and each person deals with it in their own unique way. For those that are in the caregiver role, this time is very touchy for them, too. Often family members must become the caregiver which greatly influences their routine as well, but if they are in this position, it is because they want to help, not out of obligation or because you are a burden. This experience will take some adjustment and learning for everyone, so be open to learning together. Learn to laugh, to ask questions of each other, to talk openly about things -- even your hopes, your dreams and your fears. There are peer support groups for caregivers as well, so be encouraged that you both seek support as the caregiver and as the person dealing with the disabling chronic illness.
For all who are changed by a disabling chronic illness, it is necessary to remember that while the transition is complicated there will be life after the diagnosis. You are never alone. You are not helpless. Your loved ones are not alone in this either. Be encouraged that dwelling in the now is more productive than living in the past. A new way of life and hope awaits you in the future and you are in control of all the possibilities ahead. Get on your own team and invite others to play this new game of surviving and thriving. You'll look back on this time of struggling and be glad you did.