The world is a scary place when you have to rely on others for help. When your disability limits what you can do, it’s hard to know who will be there for you and how they will react. Some things never change though: like the feeling of relief when someone finally does step in to help.
Knowing that we’re not alone in our struggles can make all the difference when we need someone else’s assistance. To those who feel lost in a sea of uncertainty – My Plan Manager hopes this blog helps clear up some misconceptions about disability and provides valuable resources for adapting with dignity.
The uninvited house guest often stays on well beyond the point of “wearing out his or her welcome.” Likewise, chronic illness/disability is not a short-term inconvenience but rather a long-term, often a permanent way of life for many people. In the early stages of adaptation, the changes that happen in our lives and families may seem tolerable — at least. But, at the same time, we still think there is a chance that the diagnosis is wrong or the cure is in the magic pipeline.
Eventually, denial and bargaining gives way to anger and depression. The uninvited guest is still ever-present, and no amount of cajoling or suggestions result in change. Bouts of anger may become a way of life for a while.
Many people flow in and out of anger and depression rather than progressing neatly through one stage and into the next. It is often said that depression is anger turned inward, which makes expressing anger safely and effectively very important. Getting adequate support from formal and informal support networks is critical.
It is not unusual for tempers to flare and fuses to shorten during this period of adjustment. People who are typically long-suffering seem to be constantly on edge; those with fewer coping skills may be in a chronic state of agitation and irritability.
It often seems as if they are pushing away those who are closest to them at the time when they need them most.
Loved ones may unconsciously spend less time with the person who seems to find fault in their best efforts. As a result, children are often left confused and afraid. Doctors and other providers frequently find themselves being blamed for their inability to help. This is all part of the process of adaptation.
While most people understand cognitively that their loved one is struggling and coping as well as can be expected, their feelings of inadequacy and powerlessness may lead them to retreat on some level—if not physically, then emotionally. This often feels like abandonment to the person who is already overwhelmed by disability or illness. Therefore, caregivers and loved ones need to be aware of their feelings and find support.
Separate the person from the behaviour. Try to remain aware of the actual target for your anger—the illness or disability, not the person in your midst. Remember that we often treat those we love the most with the least respect; make amends as soon as possible if you do so. Give each other a break and extend the benefit of the doubt when possible.
If your loved one mistreats you, remember that everyone is under extreme stress and doing the best they can at that moment. It is also good to remember that your caregivers and medical providers are probably not inadequate, but the resources they have to work with may be.
Caregivers and loved ones should speak up if they are being mistreated. Being sick is not an excuse to mistreat people, mainly if there is a pattern of abusive behaviour developing. These behaviours need to be identified and discussed in a calm, loving way (not in the heat of the moment). This may require professional help or perhaps the assistance of a minister or family friend who is not emotionally involved.
Most of the time, the person who lashes out or mistreats people feels guilty and needs the opportunity to make amends. For those unaware of how their behaviour comes across, specific examples of unacceptable behaviour or hurtful/abusive language helps them develop a better awareness of their inappropriate behaviour. In some cases, this is a manifestation of the illness or disability. In others, it may be the result of coping skills that are maxed out. Either way, left unattended, it usually gets worse. This is not the time to let conflicts and hurt feelings stack up. If you need help addressing these issues, ask your medical provider for a referral. Providers often have therapists or chaplains they work with who may be able to help.
Depression often occurs during the adaptation process and may happen at other times or be continual. Clinical depression can be complicated to manage. It is more than sadness or disappointment; depression is a collection of symptoms that exist most days for two weeks or longer and creates some level of impairment in daily functioning. The symptoms may include any of the following:
- Low energy or agitation/irritability
- Loss of interest in things previously enjoyed
- Problems with concentration/foggy thinking or trouble making decisions
- Changes in sleep or eating patterns
- Feelings of guilt or worthlessness
- Thoughts of death or suicide/not wanting to live
- Rumination/negative thinking
- Others (physical pain, changes in motor skills, etc.)
If you or someone with a disability you know has four or more of these symptoms for most days over a two week period, talk to your medical provider about getting help.
The adjustment period can be challenging on its own, as it involves adapting to accommodate the demands of your body in ways that might feel unfamiliar or even scary. “I wasn’t excited about needing an ostomy and having to defecate in a bag for the rest of my life, but I was looking forward to feeling better and getting to participate in my life again,” says Jennifer Brown. She needed an ileostomy to treat complications of Crohn’s disease.
But it can be challenging for another reason, too: the social attitudes surrounding disability. It’s not uncommon for people to have minimal social contact with people that have a disability while being surrounded by media that depicts disability as a tragedy and a bad thing.
You’re probably used to hearing lines like “she’ll never dance again” or “her crippling depression made it impossible to work.” Or, conversely, you hear the success stories that seem impossible to match, like the Paralympic athletes who compete at the top of their sport or amputees who summit Everest.
When you suddenly learn that you’re disabled — whether via a sombre conversation in your doctor’s office about some test results or when you wake up in a hospital bed and realise something is very, very different — and you have no contact with the disability community, it’s anxiety-producing, and a lot to cope with.
Lacking a frame of reference or role models, some people feel very lost, according to Maas: “I didn’t connect with the disability community until well after I had adjusted,”, who noted that she learned a lot of things the hard way and sometimes developed tricks and shortcuts that were, in the long term, harmful — but she didn’t have any resources to point her in the right direction.
Talk therapy can help to adjust
David Kaplan, the Chief Professional Officer of the American Counseling Association, says that while the basic medical needs should be taken care of first, getting people into group counselling is critical.
Individual counselling can also be tremendously beneficial. Rausch says that helping people come to terms with disability and its role in their lives can be an ongoing process and includes holding space for what has changed while looking forward to the future. She encourages her clients to think of their lives and identities like a wheel, with themselves at the centre, and all the influences around them emerging as spokes: maybe that’s a mother, dietician, wife, cook, lover of romance novels. A disability may appear as another spoke, she says, but it shouldn’t consume that centre spot, and being around people who share that experience can be helpful.
Maas’ medical team didn’t make moves to connect her with fellow disabled people, and Brown had a similar experience. While nurses taught her about the primary management of her ileostomy site in the hospital, they sent her home with pamphlets that were “obviously aimed at someone in their 60s, not a 28-year-old.” For both, it was the internet that led them to communities of people with shared experiences. “I stopped thinking of it entirely as chronically ill and started thinking of it as a disability, and it doesn’t have to be entirely a bad thing,” says Maas. “Maybe it was a second adjustment period.”
There’s also a field of counselling that applies explicitly to helping people adjust: rehabilitation counselling. Just as people may have physical rehab to help them learn to use mobility devices, learn more about physical limitations, or re-learn specific skills, counselling can provide them with critical coping techniques, says Kaplan.
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Transitioning into a different life isn’t the end
Both Kaplan and Rausch note that feelings of isolation, extreme loneliness, despair, and hopelessness are ominous signs. People facing newly-acquired disabilities who feel themselves slipping away from the world might want to get proactive about seeking counselling and community.
Their friends and loved ones can also offer support — that may include things like connecting people with services, helping out around the house, or just making a point to spend time with people while they explore their new lives. “If you can adopt a little thing,” Maas says, it will bring you one step closer to comfort in your body, and that, in turn, can get you one step closer to adjustment.
“The transition is hard. It sucks, there is no doubt. Things will not be the same, but you will learn to adjust, and it will become normal. Once you’re through the transition, you will be yourself again, if a slightly different version,” says Brown. “Try to find people to joke about it with if you can.” She acknowledges that it’s okay to feel sad or angry or frustrated, too.
There’s no right or wrong trajectory for adapting to disability
Some people find themselves beginning radically new chapters of activism in their lives. Others settle into their unique selves but don’t necessarily embrace disability as part of their identity.
Learning about the different models of disability — social and medical being the most common — and connecting with people who share your experience can be a powerful inoculation against isolation and fear. There’s no shame in seeking support to help you come to terms with a significant life change.
Natural remedies to ease depression
It’s recommended that people talk with a therapist when dealing with situational depression and get as much activity in as possible. This may mean simply walking outside to get the mail, sitting on the porch for 20 minutes to have a cup of tea or juice, watering the plants, or walking the dog. Sunshine is another natural remedy that increases vitamin D, which is often deficient in people who are depressed and those who do not go outside often.
Eating well is also critical, and there are natural supplements available at your local health store that may help with situational depression. Talk to your medical provider or therapist about these options.
Support groups and self-help groups can be beneficial. Groups provide an excellent resource for people living with chronic illness and disabilities and their loved ones. You can find online and local resources, and most are free. Many are affiliated with local hospitals or nonprofit agencies that serve people with chronic illnesses or disabilities.
If depression is severe enough to impair functioning, or you/your loved one has thoughts of suicide or not wanting to live, it is essential to get professional help immediately. Start with your medical provider or therapist unless the person with depression plans to cause self-injury or death.
Using the analogy of the uninvited house guest, this is the period when people have settled into their routines and learned to live together with whatever adjustments are necessary.
The initial period of adjustment after a disability or illness almost always requires going through each of the stages in the process outlined here. However, it can take a long time for some to arrive at adaptation, and not everyone in a family gets there simultaneously.
With some luck, support, good communication, and teamwork, the process will likely resolve in time for most people.
Unfortunately, surviving the initial period of adjustment does not ensure there will not be others. As mentioned earlier, people tend to get emotionally triggered when there are relapses or new symptoms/stages of the illness or disability occur—starting means that some reminder of the initial trauma (usually diagnosis or the actual accident or disease) sets off the same cascade of emotions experienced at the time of the actual event.
Living in fear of a relapse or a change in physical status creates a certain amount of anxiety for everyone. The unpredictability of living with a chronic illness or disability will be the focus of our next article.
This is the most challenging time, and naturally, you will be down about it, yet with a few changes, you might still be able to live your life to the full. The following easy steps should help you in the right direction.
Allow yourself time to come to terms with your disability
We understand how you feel. The whole world is upside down, and you are in the middle of it, believing life will never be the same again with you just being miserable fighting your illness or disability. You might lose your friends because you will no longer be able to socialise as you used to. But this is also the time to find out who your real friends are.
Thinking positively is no easy matter, but it is important to feel good about life again. There are only two choices for you to make. You can stay depressed and complain about your problems for the rest of your life, or you have the option of trying to make the most of your life even with all your limitations.
Who is the most precious person in your life? Who do you value most? Could you give it a thought before you read on?
The only person you can always trust is you. It may sound funny, but you will always be in your own company. You can either cheer yourself up or make yourself miserable. But first of all, you need to take care of yourself and make sure that you can keep yourself as healthy as possible.
There is so much you can do to help yourself feel better. However, we are all different, and not every remedy or therapy will help everybody with the same health problem. Take, for example, allergies – they all work on the same principle when the body starts to defend itself against substances. Yet, the symptoms can be so different, ranging from runny nose, itchy or weepy eyes, sneezing, rashes, eczema and digestive problems to name a few. It is therefore understandable that some remedies will work for some but not for others.
A lot of people have said they tried so many remedies or therapies, and nothing ever worked. Some medicines take longer to kick in, and it is essential to be patient and observe the changes happening to your body.
Often the most effective self-help techniques are the easiest ones. Think, for example, of the time when you try to imagine throwing all your negative thoughts and all your pain into the bin and getting rid of them. This is known as a visualisation technique, and you can imagine almost anything you wish. Imagine yourself being strong as a leader, as someone who can make it to the top of the mountain.
Or think of yourself lying on the beach, sunbathing, and the sun’s energy travelling into each part of your body, making you feel warm and energised. You might be amazed that by imagining it, you can get all the benefits of it happening in real life. You could also consider autogenic training, where you will learn to relax, and it might even help you go to sleep if you are experiencing problems with your sleep.
Praise yourself for any minor achievement of the day, no matter how small. It is essential to find the proper exercise for you too. Be persistent; do not expect any large results immediately. Likewise, it is essential that you follow a healthy diet and eat regularly.