Arjan Bogaers

@arjanbogaers | contributor
A lower spinal injury ended my career as a hospital nurse and in-house therapist. As an illness / disability coach for www.heartandsoul.co.za , I now assist people with chronic illness, pain and disability in living a life of quality and meaning. My wife and I live in the countryside of the Western Cape, South Africa. Your questions and brief confidential presentations are most welcome at: heartandsoul.arjan@protonmail.com
Community Voices

Who or what do you feel has too much power in your life?

<p>Who or what do you feel has too much power in your life?</p>
47 people are talking about this
Community Voices

motivation #

There is no shortage of self-care suggestions, indications, ideas,tips, etc. And many of us know what we could / should / want to do. In fact, the sheer volume of information can be overwhelming to the point where you lose cohesion and as a result, end up not implementing any of the wonderful ideas. The real challenge is knowing how to bring in renewal and change. So maybe one way is to:
1. allocate a limited time to consider all the ideas and suggestions, and make a list ( of, say five or six choices)
2. Then consider what / who you need to realise that selection.

#52SmallThings

1 person is talking about this
Community Voices

Family Coping with Chronic Illness

A #ChronicIllness of one family member changes

family members’ roles, responsibilities and boundaries from those of a family

where everyone is healthy. It may even disrupt their self-images and

self-esteem and result in an uncertain and unpredictable future. It furthermore

triggers distressing emotions — anxiety, #Depression, resentments, feelings of helplessness,

as well as possible illness-related factors such as permanent changes in bodily

functioning and physical appearance.

The person who is chronically ill could feel very guilty about the demands his or her illness makes on the family. He or she might

have to deal with the threat to her/his autonomy and even resent the change in

roles and responsibilities caused by the limitations imposed by the illness.

And so, as the disease progresses and presents

new challenges, the family will have to restructure family responsibilities, routines and

roles. As circumstances change, adjustments need to be made.

Now, one might expect that the presence of

a chronic illness would inevitably result in significant emotional difficulties

and breakdown in family functioning. This does indeed happen, but the opposite

is also true: despite the presence of conditions and situations that are

clearly traumatic and disruptive, a substantial proportion of families make

satisfactory if not magnificent adjustments.

Effective Ways for Couples

to Cope

We usually talk about coping as:

problem-focused: taking care of

what needs to get done. This is primarily a practical approach and focuses on the

effects and demands the illness has on daily structure and tasks, household

chores, medical regimen, pacing of activities, work options, issues of income

and expenses, social engagements, etc.

emotion-focused:  trying to reduce emotional distress. This

requires continued efforts by all family members to address and express their feelings,

to inquire after one another and initiate dialogue, to seek emotional support and

to allow a free space for each other’s emotional struggles.

There is a third type of coping however,

that is often under-acknowledged and neglected, but which is critical for

couples and families faced with a chronic illness:

relationship-focused

coping: focusing on maintaining the quality of the relationship. When faced

with a stressful situation, partners and family members insofar as appropriate,

given children’s ages, would attend to each other’s emotional needs in order to

maintain the integrity of the relationship. Relationship-focused coping involves

a balance between self and other. In this, the illness and the person who

happens to suffer the illness are not the primary focus. The couple’s /

family’s relationship is.

 

The following strategies have proven to be

effective:

View

the illness as a couple or family problem:

This is an often under-recognised issue:

without being consciously aware of it, the family member who struggles with the

illness is seen by the others, and possibly by her/himself as ‘the one with the

problem’ or ‘the weakest link.’ This immediately creates a rift between ‘him’

and ‘us’ or ‘her’ and ‘us’. This is very painful for the family member with the

illness, because s/he already needs to make a lot of effort to not view

her/himself as the one with the problem, with all the associated emotions of

guilt, shame and worthlessness. If on top of that, the ill person is singled

out as being the one who creates the problem(s), s/he will only feel more

inferior, guilty and ashamed, which would inevitably contribute to depression

and feelings of isolation.

If both partners take a relationship perspective however,

they see the illness as a problem for the

relationship, rather than just a problem

for one individual. This creates a shared acceptance and responsibility. They

talk about the relationship as a way to cope and maintain the relationship.

Couples who become aware of and discuss the relationship implications of a partner’s

illness can anticipate how their relationship may change and prepare for the difficulties

they may face. Couples who are resilient when faced with a chronic illness believe

that they are in it together and serve as each other’s confidante, advisor and

sounding board. Therefore, their attention should focus on the relationship as

its own entity.

For example, if the caregiver is thinking

about how difficult it must be for his or her partner to be ill, then the focus

is on the partner and not on the relationship. Likewise, a rift of ‘me’ and

‘them’ is created when the sick person feels guilty and ashamed about how

others must surely struggle because of their illness.  With “relationship awareness,” the caregiver

focuses on the relationship by telling his or her partner that the difficulties

posed by the illness (note: not by him

or her ) are their difficulties, thereby taking a relationship perspective in

dealing with the illness. This necessary shared acceptance and responsibility

greatly reduces stress, anxiety and depression.

Communicate

with each other:

To start with, it is important to repeat

here what was mentioned above: The illness is the family’s challenge and task, not only of the person who happens to

have the condition. This shared acceptance and commitment are necessary to

maintain cohesion, smooth coping and a wholesome family dynamic.  In this, family members need to communicate

constructively about the illness and treatment. Please use active and empathic

listening skills and consider each other’s perspectives. Be mindful of what is

being communicated and how it is being said. To emphasise a previous point: the

issue is about the illness and its

associated symptoms, challenges, limitations and needs, not about the person.

And finally, let not the marriage / family

be dominated and defined by the condition. Although the illness affects family dynamics

and options, there are still all the other aspects of family life to give

attention – family outings, shared events, children’s activities and spending

quality time together of any nature.

Limitation brings depth. The limitations

associated with a chronic illness are challenging, but can bring new depth and

sense of purpose into the couple’s and family’s relationship.

 

Community Voices

What's the point?

What's the point of maintaining a healthy lifestyle but you can't seem to feel like you're getting better or even see a little progress! It's disappointing when you maintain healthy routine/habits, still you feel as fucked up as you were. It's frustrating when can't exercise as planned cause you lack of energy, your body doesn't do what it needs to be done and your mind doesn't exactly cooperate! So what's the point?
#Depression #Anxiety #Lifestyle #Healthy

12 people are talking about this
Nikki Andersen

Accepting My Disability

Last year, I was sitting in the waiting room of a hearing center, along with a young mother and her toddler. The mother was talking to the receptionist and she said something that resonated with me. She said, “The moment I stopped being ashamed of my own disability was the moment I put hearing aids on my daughter. I’m not ashamed of who she is, so how can I be ashamed of myself and my disability? I need to show my daughter that having a disability is normal, and I need to do that by accepting myself.” This conversation influenced my journey in accepting my own disability. Had I believed for all the years prior that I wasn’t enough, and I wouldn’t amount to anything because of my disability? I think a part of me did. Recently, I’ve analyzed how I had seen myself for the last few years and looked at what I had made it all mean. And I removed myself from what others told me “disabled” meant. We are not the labels people have placed upon us to make it easier for them to comprehend our differences. Disability isn’t a deficit within an individual. It’s a deficit in a culture that doesn’t accept or enable a person for who they are. Having a disability can make you look different or feel different, but it does not make you less able, successful or worthy. My disability may deprive me of seeing the world like everyone else does, or doing things other people can do – but it doesn’t deprive me of my skills, my passions or my abilities. My disability has made me a little bit stronger and braver; a more whole human. It helped me see a bigger version of humanity, and to understand that chasing perfection is damaging lie. I’ve become more accepting of people – especially those who are different to me. I’ve learned lessons in resilience, perseverance, courage, adaptability, and above all, hope. My face and my body are a map you might read me with. A surgeon’s blade saved my life twice, and my sight four times over. I have been drama and wonder, grief and joy, despair, success, failure, courage, fear and gratitude. I have been – and will be again – guilty of too many things, especially of not loving and accepting my body, just the way it is. The way people with disabilities or chronic illnesses are portrayed in the media ruined any ounce of self-confidence I had growing up. When I finally changed the way I felt about my disability, it was like magic. It seemed others changed the way they saw me also. I began to think more deeply about it: was it just that my perception of myself had changed? Did I now see myself as a whole flawed human being and not as a disabled person? And then that day at the hearing center, it all clicked. None of society’s voices, or my own voice on what disability meant mattered. I realized I had an opportunity in my life now, whether I had a disability or not, to step into who I truly was and stop being defined by what I once believed about myself. This is also true for you, no matter who you are.

Community Voices

I just want somebody to relate too...

Okay, I am new to this so here goes, my name is Thomas. I have mild autism, ADHD and PTSD. Most days are a struggle when the chronic and overwhelming thoughts take over. Family and friends don’t entirely understand since they don’t live with my dysfunctional way of thinking. Even though I appear rational, headstrong and in sync, I’m most like battling my own mind. Sometimes, suicidal thoughts come to play. They are like a mist in the grey hue of my perception. They lurk and stalk me like a prey. Waiting... Just waiting. Until I ask them to take my life. But I remain strong and I carry on. I have to. For the sake of love, compassion and kindness.

#Depression #Anxiety #Autism #ADHD #PTSD #Surviving

52 people are talking about this
Community Voices

Your trauma is VALID

<p>Your trauma is VALID</p>
28 people are talking about this
Community Voices

"You wouldn't think I struggle with my health because ____." #CheckInWithMe

It's a damaging fallacy that people with mental health struggles only look "a certain way." This can keep those who don't fit that "certain way" from receiving help or even recognizing they need help in the first place. So tell me, Mighty Community, what are some of the ways others wouldn't know you struggle with your mental health?

107 people are talking about this
Community Voices

Reinventing Myself is HARD

I am no longer the smart chick or the cute chick or the sporty chick or the creative chick. I am no longer social or involved in annual events. I am mostly home bound, circling around and around in my own head trying to find who I am now. I refuse to be my illnesses, but change is hard and I'm drowning a little bit right now. 
#CheckInWithMe

80 people are talking about this

25 Unexpected Things Caused by Chronic Pain Being Your 'Normal'

When you develop chronic pain, you may not realize just how much your life can change. Due to the constant pain your body is in, your “normal” may look different than it once did. Most people have a vision for their life, but this vision may have to be altered or even thrown out the window when you have a chronic illness. You have to adjust your life to account for your new symptoms, and this can be a challenge. On top of the “normal” stressors of work and family most people face, those with chronic pain have to deal with the stress of experiencing constant pain. Mighty contributor Rebekah Dorr explains, “The only thing constant and reliable about our ‘new normal’ is that ‘normal’ is always evolving, sometimes hour by hour.” Whether it’s learning how to determine the severity of your pain, or navigating your daily routine with chronic pain, learning how to live with chronic pain is an adjustment. Whenever faced with a challenge, like chronic pain, you can discover some unexpected things – sometimes good, sometimes bad. That is why we asked our Mighty community for an unexpected result of chronic pain becoming their “normal.” No matter what surprises you’ve encountered throughout your journey with chronic pain, know you are not alone in facing these ups and downs. Here is what our community shared with us: “Not knowing when to actually go to the doctor. Since pain is my normal, and symptoms fluctuate, I don’t know what pain isn’t normal for me.” – Joanne S. “I stopped complaining about my pain so much. So now people think that I’m fine just because I don’t constantly complain about every single ache and pain.” – Rebecca J. “Pain insomnia. Sleep is rare!” – Jenny S. “Other people’s ignorance and reactions. ‘But you don’t look sick, it must be nice to stay at home all day and not have to work, have you tried going gluten free, maybe you shouldn’t take so many medications…etc.’ Losing friends because they can’t rely on you or understand what you’re going through.” – Allison M. “The mental health aspect that goes with pain. How much people don’t know [goes on] behind closed doors with how much suffering.” – Zoe B. “The amount of time I spend pretending not to be in pain. Sometimes I just smile out of habit even when I’m on the verge of tears. Learning to fake a convincing smile over the years has been mastered and is so easy now that even the people closest to me have no idea the level of pain I’m in until I eventually burst into tears and finally break.” – Sammi H. “No one believing that I’m in pain all the time and every single day anymore.” – Paulina A. “Not knowing whether to disclose your chronic illness to employers or not, or to tell them of your limitations.” – Sarah K. “Feeling disconnected from friends who I used to be ‘joined at the hip’ with. The chronic pain created this weird vibe where we just don’t understand each other the way we used to. It’s been over eight years since my pain started and I’m still upset over it.” – Alisa E. “Not realizing you injure yourself because that part always hurts. Not realizing how bad you hurt until you sit down or lay down.” – Mackenzie P. “Having to learn how much your body’s limitations have dropped. Example: I used to go to the gym, play football and go running which I can no longer do now, so I underestimate my limits to protect from making the pain any worse.” – Matthew K. “I’m so used to ignoring the lower level pain that it’s hard to identify the location and severity. Finally, I have given up on a 1-10 pain scale all together. I have a four color system for myself. To me, this is normal. The outsider might find it odd that I rate my pain at any given time by these four colors.” – Heather R. “The fatigue. Man, I could sleep 12 hours every single night on a ‘normal’ day. I am constantly exhausted now, I have forgotten what it feels like to not be.” – Ashley B. “You completely forget what a good day can feel like and what it means to run with your kids even or go shopping without pain or assistance.” – Kathryn H. “No idea I had the flu until everyone else in my house dropped like flies. The low grade fever, body aches, malaise, chills are my norm so I didn’t know.” – Britt C. “How much pain I can tolerate. I get Botox, steroid injections and sometimes trigger point injections and the doctors [and] nurses are impressed that they can do the procedures and I hardly move a bit. My primary care doctor tells me I should be taking my painkillers more than I should. All of my doctors know (any urgent care as well since they can see my medical notes) that if I go in for an urgent appointment I am in that much pain. I am stronger than I ever thought I could be when I first found out about my back problems and my migraines got bad.” – Roxy R. “The disinterest and apathy of many people around me. Acute illness elicits sympathy and care, when it’s chronic people stop caring and think you can obviously cope.” – Simonne K. “The pain scale getting thrown out of whack. When I have low pain days constantly that slowly ramp up into a bad flare up it takes my brain a while to realize that ‘oh this is a level of pain that is normally a 9, maybe I should take my meds.’” – Julia M. “How difficult it is to actually explain my pain to someone (doctor). You would think because you go through it so much, you would have the words.” – Sarah M. “I go from feeling confident in my ability to mask my symptoms for several days, to breaking down over feeling the weight of the pain, only to piece myself back together and start afresh knowing the same problems could flare again at any moment. And yet, while the symptoms have continued, I can tell that the initial grief and anger over my diagnosis have begun to subside; and, while anxiety still floods my brain frequently, I’ve been able to find the humor in my quirky needs as a semi-able-bodied individual, and joy in just being grateful for the moments that others do show compassion.” – Angela S. “My new normal is trying to live as ‘normally’ as possible without overdoing it. So I guess from a distance, I look like I am playing the part.” – Alexandria M. “I’ve become a better advocate for myself. Rather than spending all of my energy fighting something that doesn’t seem to be going away, I can stop pushing myself past my limits, learning to live with it, and learning to accept what my needs actually are instead of what I wish they were.” – Sierra R. “The absolutely constant judgment because I’m not getting better.” – CeCe H. “How much I stress over having company and going out to visit others – even my children. I so want to be ‘my normal self’ for everyone – especially my husband – but it is getting so hard to camouflage how bad I am feeling. It is now creating stress that I find so hard to deal with. I was quite a social person, I love being around people.” – Ann A. “I found patience in becoming a chronic pain patient. The ‘new normal’ I live [in] isn’t a place that my old world always understands. I have to remember that until you get it, you don’t get it! Empathy, compassion, care go a long way and actions speak louder than words any day!” – Victoria P. Living with chronic pain is not easy – it can take your life and turn it upside down, and inside and out. If you have had to readjust your life to accommodate your new “normal,” know you are not alone, and that you are a warrior.